It got too quiet and I check on Gigi…yeah she had taken her toys to hang out with Jackie and watch Paw Patrol #EpilepsyAwareness #SCN8AEpilepsy #RareDisease #StrongerTogether #FamilySupport #SpecialNeedsFamily #DisabilityAwareness #WarriorPrincess #InvisibleIllness #EpilepsyWarrior #siblings #sisterlove #sisters #sistersister #sistersquad #VisualImpairment #PediatricEpilepsy #RareGeneticDisorders #ChronicIllnessWarrior #scn8a #gtube #growtogethercommunity #specialneedscommunity #DayInTheLife #SpecialNeedsAwareness #ChronicIllnessCare #RareDisease #gtube #instagramkids #toddlersofinstagram
Just shy of celebrating a year of being seizure free the seizures started again on Sunday afternoon. Juliet was flown to Royal Hobart late in the night having breathing difficulties and try to stop the cluster of seizures. The unpredictability and complexity of her disorder makes it difficult for her to have a ‘normal’ childhood - seizures being just one aspect of what she has to navigate. We are home now and starting the recovery process again - Juliet is proving to be the most resilient person I’ve ever known. Now more than ever Brad and I will try to embrace every experience we will share with her because we all know, life is too short. Thank you to our family and friends for being the support system that we would be lost without. We also had an incredible team in the emergency unit at the LGH and ICU in Hobart. #pcdh19 #raregeneticdisorders
share if you think more people need to hear this 🗣️✌🏼 #inclusion #inclusionmatters #disability #advocacy #advocate #disabilityreframed #rareparenting #raregeneticdisorders #tnrc6b #autism #autismacceptance #fasd #developmentaldelay #adoption #advocatesforallabilities
A book written by a fellow PTLS mama💚 Ava and the Little Yellow School Bus: A book for parents and children, alike, that describes living in, and navigating, the world of special needs. From happy to sad, difficulty to triumph...this book so nicely depicts the rollercoaster of emotions that a family goes through when raising a child with special needs. A story of hope and love that permeates throughout, as Ava (and her parents) travel on her journey in life on her little yellow school bus. Head over to our online merch store to purchase this book today!
Witajcie! W tym tygodniu mieliśmy 3 konsultacje: • stomatologiczna • laryngologiczna • gastrologiczna Z dobrych wiadomości: w wynikach badań gastrologicznych wykonanych w kwietniu nie wyszło nic martwiącego ale z uwagi na całokształt przypadku Blanki i aktualny obraz kliniczny nadal zalecane jest ostrożne podejście do diety i leczenie objawów alergicznych. Nie jest to koniec drążenia bo jak alergicy wiedzą temat nie należy do kategorii 0:1, zwłaszcza w złożonym przypadku medycznym. Zdrowia wszystkim! ________ #malablankazwielkimsercem #modelka #dzielnapacjentka #zdrowie #niewidzialnaniepełnosprawność #rzadkiechorobygenetyczne #ozn #rubinsteintaybisyndrome #rubinsteintaybi #raregeneticdisorders #rarediseaseawareness #medicalcases #healthcare #specialneedskids #specialneedsparents #specialneedsadvocacy
Quotes of Hope💚✨ Today we have Amy, mom to Chloe, 19 yrs old. “Without research, there is no progress. Without progress, there is no hope. I choose hope for my child’s future.”
MAJOR UPDATE!!! Damian got his zolgensma dose ❤️ this last month has been amazing thankfully damian was able to get 3 out of the 4 starting shots of spinraza to help him get stronger and now with the zolgensma we hope will help much more. We honestly couldn’t be more thankful to everyone involved from his amazing medical team at the umc of Nevada and his neurologist we have been able to give our Damian an amazing chance at life. Also major thanks to all of you who have kept up with his story without the support from all the generous donors and people who have shared our Damian’s story we wouldn’t be here today. Going forward will be a bit of a process for the next 3 months Damian will have to get labs drawn weekly and see his neurologist weekly as well to just make sure everything is going how it should. Now as far as an update on his muscle tone / movement we have definitely seen an increase since starting with the spinraza he has alot more dexterity in hands and can articulate them much better in a laying position , sitting is still difficult but much better then before he can move his head side to side with support and hopefully with the zolgensma he will be able to hold his head unsupported. We will continue to post updates and anyone who has questions please feel free to contact us especially any families going through the same process (version en español abajo) #curesma #sma #zolegensma #hope #lasvegas #lasvegaslocals #raregeneticdisorders #damiansfight #latino #latinoswithdisabilities #goddid #godisgood
Today is Prader-Willi Syndrome Awareness Day, and the best way to show our support is to help spread the word. Prader-Willi Syndrome (PWS) affects 1 out of every 15,000 newborns. This rare genetic disorder causes a child to exhibit intense, insatiable hunger, which can lead to morbid obesity. Symptoms may include excessive hunger, slower growth, angry outbursts, physical aggression, learning difficulties, behavior issues, and poor muscle tone. Thankfully, researchers continue investigating new treatments for those living with this serious condition. To learn more about PWS, visit http://pwsausa.org. #PraderWilliSyndrome #PWSAwarenessMonth #ChildhoodObesity #morbidobesity #raregeneticdisorders #hypothalmusdisorder
I have laughed about this off and on all week. Laughing so I don’t cry, I mean. 😂 But also crying just enough so I don’t turn into more of a brick wall than I already am. But also not laughing OR crying too hard so that I don’t pee my pants a little because, well, two kids. I wish chapped lips were all we had to deal with. But also thankful that I get to be her voice in all of this. But also wishing it wasn’t her and that it wasn’t so hard. If this isn’t constantly your brain, are you even a rare disease parent, though? Do you have a good story that sums up rare disease in a nutshell? Share it below ⬇️ I guess go ahead and drop your best remedies for chapped lips too. 😂 Seriously, though, thanks for being here and laughing with me. 🫶🏼 #medicalmom #medicallycomplex #medicallycomplexkids #medicalhumor #rarediseaseawareness #raregeneticdisorders #advocatelikeamother
The girls have school spirit #USC #schoolspirit #uscbasketball #usctrojans #toddlersofinstagram #instagramkids #nikekids #nike #fighton ✌🏽❤️💛 #scn8a #epilepsy #cerebralpalsy #corticalvisualimpairment #specialneedschild #tubiekid #medicalmom #familysupport #strongertogether #specialneedsfamily #DisabilityAwareness #InvisibleIllness #EpilepsyWarrior #CerebralPalsyAwareness #ScoliosisAwareness #QuadriplegicLife #FeedingTubeAwareness #VisualImpairment #PediatricEpilepsy #RareGeneticDisorders #ChronicIllnessWarrior
This little one hasn’t been sleeping great lately, we were provided with a sleep system for her cot and it’s safe to say she absolutely hated it! So I have taken it back out to see how she goes. She’s got 2 teeth that have broken out of the gum too so maybe that’s not helping with the night time sleeping. She’s also only grabbing a 20 minute or so nap during the day, so we’ve been catching naps where we can🤣 I’ve just put her down for the night, so fingers crossed for a better nights sleep🤞🏻 #partialtrisomy7p #rarechromosome #trisomy7 #raregeneticdisorders
🧬🎙️ Being a diverse region with varying cultural and religious beliefs, genetic counselors in the MENA region must approach their work with sensitivity and respect for the values and traditions of their clients. You are invited to what we hope to be an interesting panel discussion on “ Genetic Counseling in Mena region challenges and opportunities “ during the first edition of Mena Association for Genetic Counselors Annual Meeting To see the full agenda and register follow the link in bio 🔗👆 @mena_rare_diseases #genetictesting #geneticcounseling #genes #community #culturalheritage #geneticdisorder #raregeneticdisorders
Cheers to the unsung heroes who selflessly give their all, every single day. Today we would like to mention and celebrate the extraordinary love and resilience of mothers who walk this PTLS journey. Your strength, patience, and unwavering devotion inspire us all. Happy Mother’s Day to the real MVPs! 💚
A year ago today marks the day our whole world was flipped upside down. My son went in for an emergency surgery in his left shoulder and what we thought was over was nearly getting started. My healthy little boy ended up with brain damage afterwards due to an underlying problem which was not detected since an MRI was never conducted after the antibiotics from the bacterial infection ended my son started regressing losing all his motor functions... And this is where his CP journey began. ♿️ #May72023 #Prayers #GodSpeed #CerebralPalsy #Disabled #Disability #SpecialNeeds #PhysicallyImpaired #SpecialNeedsFamily #BrutonAgammaglobulinemia #XLA #BTK #RareGeneticDisorders #Meningoencephalitis #NeisseriaMeningitidis #BrainInfection #Immunocompromised #SCARS
Baby boy is back in the operating room getting ready for some dental work. Sitting here in this hospital takes me back almost three years ago to his first procedure. My nerves were a wreck 🤦🏽♀️. Thankful for all of the progress that he has made to this point. He has a ways to go, but we are on our way! #MamasBoy #LastChild #BabyOfTheFamily #TubieMom #JaxsonsJourney #raregeneticdisorders
Why share your story with us? Sharing our stories, experiences, and hardships is one of the most effective ways to connect with each other. Hearing your story could help someone else open up about their own challenges or journey. 💚❤️🩹 Email them to [email protected]
Continuing our “Quotes of Hope” series! 💫 Today we have Lucia, mom to Jimena (2.5yrs old): “Research is fundamental in order to provide our kids with the best life. Hope is what fuels us to pursue it” 💚
We’re at @globalgenes Rare Drug Development Symposium this week! Stay tuned for updates as we learn more about how to support WWOX patients through finding effective treatments for WWOX gene-related disease! #globalgenes #rare #raredisease #genetics #parentadvocate #advocacy #raregeneticdisorders
Meet the Team 🧬 🔬 Dr. Pehlivan is an Assistant Professor in the Department of Pediatrics/Neurology at Baylor College of Medicine (BCM). He graduated from University of Istanbul and completed his genetic residency training at the same institute. He then moved to United States of America and joined the laboratory of Dr. James Lupski at BCM to study identifying genetic etiologies of many neurological conditions. He completed his second residency in Child Neurology at BCM. He is a physician scientist at Texas Children’s Hospital and working on genetic-based treatments for neurogenetic disorders. He has co-authored over 110 articles and received numerous awards from national/international organizations. We are honored and excited to have Dr. Davut’s expertise and passion driving our efforts forward.
And just like that … Jules managed to sit down by himself today. Like a pro. As if he has done this his entire life (6 years). For most parents, a non event and a milestone that occurs much earlier. But we had to cheer and celebrate! Well done little dude! Keep going against all odds and predictions! #rarediseases #youhooverfong #youhooverfongsyndrome #youhooverfonglooksgreatonthiskid #neurodivergent #neurodivergence #disabilityparenting #disabledchildren #disabledchild #raregeneticdisorders
Let’s celebrate National Month of H O P E💫 Fueling hope through action. ✨ Join us at PTLS Hope Research Foundation as we empower families, fuel research, and foster community for those affected by Potocki-Lupski Syndrome. Together, we’re paving the way for a brighter future. #PTLSHope #potockilupskisyndrome
David Vetter: The Legacy of the Boy in the Bubble and the Quest to Cure SCID #avidVetter #bonemarrowtransplant #genetherapy #healthcareinnovation #immunodeficiency #immunology #medicalethics #medicalresearch #raregeneticdisorders #SCID https://www.frnwh.com/2024/04/david-vetter-the-legacy-of-the-boy-in-the-bubble-and-the-quest-to-cure-scid/
Parents of children with rare genetic conditions frequently find themselves navigating uncharted territory. The journey ahead is filled with uncertainty, questions and fear. But amidst the challenges, our mission remains clear: progress knowledge & research into treatment options and pave a path forward with hope💚
Meet Lucy Lucy was diagnosed with PTLS when she was 20 months old. When we received Lucy’s diagnosis we were anxious, overwhelmed and concerned about the future and the unknown. Lucy is nonverbal, has low muscle tone, low appetite, and constipation. She loves books, lights & animals! We are concerned about what the future will look like, what kind of care we need to get in addition to what we are doing now. Research is so important to us and for Lucy’s future.
Big milestone today. I communicated a full breakfast with my mom. 1. I chose between drinkin and eating with pictures durin breakfast. 2.when I wanted to drink I took the picture "choose". Mom put "eating" and "drinking" and "I' m ready" infront of me. I chose. Repeat. I chose. In the ens I chose "I'm ready." 3. After this there was a test. Mom asked me with spoken and sign language "Do you want medicine?" And put " yes" and "no" in front of me. I chose "no" and laughed! 4. After this mom asked me do I want my vitamins? And put the "yes" and "no" infront of me. I chose "yes" and took it happily. After this mom cleaned the table and I thought there would be no meds today. Yey! 5. But no, mom came back with the medicine and said to me it is not a choise for me. 6. The she put infront of me "choose" and "change diaper" and "wash hands" and ofcourse this was said out loud. I chose "wash hands". And we did! Say yay for me! Iunderstand so much. I can't speak and I have a lot to say. It is a struggle and takes a lot for my mom to communicate with me 3 different ways. Believe me. Think if you would need to speak to your child everything in 3 different languages and only one would be native for you an the other 2 you are learning yourself as you teach your child. #angelmansyndrome #angelmansyndromeawareness #raregeneticdisorders #angelmaninoireyhtymä #cureangelman
CEREAL de Mayo is 1 week from tomorrow!! 💃🏼 Our unique fundraiser for @beingpositioned is happening on Saturday, April 27th at 6 pm in Alpharetta, GA. Tickets are $55 and include a delicious taco dinner, a drink ticket, and of course — our cereal bar! 😋 Click the link in my bio to buy your ticket TODAY! 🌮🥣 And if you can’t make it to the event or don’t live in Atlanta, register (for free) to bid online during our silent auction!
What a beautiful day in Boston yesterday for the @bostonmarathon! All of us at Next Step want to send a huge thank you to our 2024 Boston Marathon team - Chase Carpenter, Tommy Bannan, Sean Foley, Valerie Degrez, and Josepth Mueller. All five runners conquered the 26.2 miles on a really warm day. Not only did they cross the finish line with smiles, they raised a Team Next Step record $66,746(!) to help fund our community, music and mentorship programs for seriously ill young people. We are so grateful to partner with these five amazing people who volunteered their time to train for one of the toughest marathons while raising critical funds that will help us welcome more young people into the Next Step community at no cost to them or their family. A special thank you to the @bankofamerica charity marathon program for inviting us to participate in this year's marathon. Thank you and congratulations, Team Next Step! #BostonMarathon #BostonMarathon2024 #IBelieveInMe #Teens #YoungAdults #Cancer #HIV #RareGeneticDisorders #ChronicIllness #Community #MusicTherapy #Mentorship #Boston #BostonMA
A short list of the ridiculous things people have said to me regarding the EDS and Dysautonomia I was born with and their co-morbidities. Do any of these sound familiar to you??? #chronicillnessawareness #chronicillnesses #chronicillness #rarediseaseawareness #rarediseases #raredisease #ehlersdanlossyndrome #ehlersdanlos #ehlersdanlosawareness #dysautonomiaawareness #disautonomia #cervicalinstability #jointhypermobilitysyndrome #jointhypermobilityjourney #jointhypermobility #comorbiddisorders #comorbidityawareness #comorbidity #endometriosis #endowarrior #degenerativediscdisease #arthritisawareness #mcas #geneticdisorder #geneticdisorders #raregeneticdisorder #raregeneticdisorders #zebrastrong #theforgotten #gaslightingawareness
Rosie had a SALT & Dietician appointment today. It was a nice and positive visit, her dietician is happy for her to start on a blended diet, minimal to begin with and increasing over time as it going to be going in the NG tube. She has her pre op for her PEG so hopefully it wouldn’t be in the Ng for long anyway. So we’re looking forward to trialling that and seeing how she gets on. She weighed in at 14lb 14oz today which is great. She’s still tiny considering she’s One next week but they arnt concerned as she is in proportion for her own track. So an overall good appointment, progressing at her own pace. #partialtrisomy7p #dietician #trisomy7p #specialneedsparent #rarechromosomedisorder #raregeneticdisorders
The PTLS Hope Research Foundation’s Mission💚 Our mission is to foster connections and collaborations within the scientific research and medical community to improve the lives of individuals and families impacted by Potocki-Lupski Syndrome. By facilitating the progression of scientific knowledge and investigation into treatment options, we aim to uplift and empower those affected by PTLS, shaping a future filled with hope, potential, and improved quality of life.
#MedicalMondays with Spectrum Hearing: There are still many options to assist with hearing needs, even with abnormalities of the outer/inner ear! #spectrumhearing #spektrumgehoor #medicalmondays #treachercollinssydrome #hearingloss #raregeneticdisorders
Research on rare diseases is crucial for several reasons: 🩺Improving Diagnosis and Treatment- Research can lead to the development of better diagnostic methods and treatments, which can significantly improve the quality of life for individuals affected by these diseases. 🧬Understanding Disease Mechanisms- By studying these diseases, researchers can gain a deeper understanding of fundamental biological mechanisms, which may lead to the development of treatments for a broader range of conditions. 🗣️Addressing Unmet Medical Needs- Research can help address these unmet medical needs by identifying gaps in care, developing new therapies, and improving healthcare delivery for rare disease patients. 🔬Contributing to Scientific Knowledge- This knowledge can have far-reaching implications beyond rare diseases and may inform research on more common conditions. 💡Supporting Drug Development and Innovation- Many pharmaceutical companies are increasingly investing in rare disease research, as advancements in this area can lead to the development of novel therapeutics and new approaches to treating a wide range of diseases. 🫂Supporting Patients and Families- Assists in raising awareness about rare diseases and advocating for increased resources and support for affected individuals. Why is research important to you? Note- a rare disease is a disease that affects fewer than 200,000 people in the United States.
CEREAL de Mayo is 3-weeks away!! 💃🏼 Our unique fundraiser for @beingpositioned is happening on Saturday, April 27th at 6 pm in Alpharetta, GA. Click the link in our bio to grab your ticket TODAY! 🌮🥣
Last week our program team hosted part 1 of our Guid to Adulting webinar. The discussion was all about relationships. Professional relationships, family and friends, and romantic relationships, they're all different but they share common threads. the young people who joined us learned what some of these differences are, as well as an understanding of how they can navigate them. A huge thank you to Maisy for leading the discussion! We're looking forward to part 2 of this series in just a few weeks! #IBelieveInMe #Adulting #YoungAdults #ChronicIllness #Cancer #HIV #RareGeneticDisorders #Community #MusicTherapy #Mentorship
Not the Easter weekend I had planned, Barnsley hospital for a little stay & heart tlc ❤️🩹💔 High heart rate, high troponin levels chest pain and generally feeling not right… #heartincident My #fabryheart likes to scare me every now and then and whilst externally I look and act so calmly about it, I can honestly say inside I am petrified, it really does scare me. I woke to sharp chest pain Thursday night that radiated into my shoulder, I was clammy but then it passed, Friday morning I was extremely fatigued but took the dog out for a walk and was soon really breathless - I couldn’t explain how I felt but I just wasn’t right.. This “I’m just not right” feeling is when I know I need to really get checked out, but then I second guess myself because I’m calm, I’m extremely tired so often think I could just try to sleep it off but maybe it’s an internal fear of knowing…. ❤️🩹❤️🩹❤️🩹 Left Ventricular Hypertrophy Fabry Cardiomegaly Leaking Valves Arrhythmia Heart Failure ❤️🩹❤️🩹❤️🩹💔 So taking some time this week whilst no ERT to rest and recoup and just take it easy… Dialling back into the basics of selfcare to reset 🧘🏻♀️ 🙏 🌿 Good Sleep Sauna Meditation Nature Nutrition #fabryawarenessmonth #fabrydisease #femaleswithfabry #lysosomalstoragedisorder #metabolicdisorder #geneticdisorders #raredisease #raregeneticdisorders #heartdisease #heartattacksurvivor #stroke #tia
You’re a warrior. You’re resilient. #raremillion #raredisease #rarediseaseawareness #rarediseasewarrior #rarediseaseadvocate #nord #rarediseasefacts #raregeneticdisorders #rarepatientvoice #makerarevisible
Did you know? 8years. The average time it takes for rare patients to receive an accurate diagnosis. On average 8-10 different physicians consulted. Fact from @chromosome8p How long did it take you to get diagnosed? #raremillion #raredisease #rarediseaseawareness #rarediseasewarrior #rarediseaseadvocate #nord #rarediseasefacts #raregeneticdisorders #rarepatientvoice #makerarevisible #didyouknow #didyouknowfacts #rarediseasefact
Coming Soon: Rare Million We are excited to share a home for our tips & tricks navigating what it’s like living with a rare disease. *International friends please bear with us until we can get more resources for you to access. Majority of the content will be based in the United States. #raremillion #raredisease #rarediseaseawareness #rarediseasewarrior #rarediseaseadvocate #nord #rarediseasefacts #raregeneticdisorders #rarepatientvoice #makerarevisible
Sometimes the difficult things that happen in our lives put us directly on the path to the best things that will ever happen to us. ~ unknown #kleefstrasyndrome #kleefstramum #kleefstrasyndromeawareness #sendparents #send #specialneeds #autism #raregeneticdisorders #raredisease #hibiapp #
He’s home ❤️ This week has been pretty horrendous for us all, we have had one hospital admission, two ambulances called and I can’t even tell you how many calls to the hospice doctors. But the main thing is he is home. I was determined that we wouldn’t be in hospital for Easter, I didn’t want to spend another holiday that we would never get back with our family apart. Every single one we have with Jago is precious, it’s a memory we will one day treasure more than anything. He’s still not completely himself but we, along with the hospital staff, hospice staff and paramedics, decided home was the best place for him. It’s his safe space. We will spend the weekend together giving him lots of cuddles, kisses and showering him with love ❤️ We wish you all a lovely, peaceful Easter spent with family, filled with chocolate and new hope for the season ahead 🍫🐥🐰🙏🏻 #easter #easter2024 #newbeginnings #newhope #spring #cacna1e #cacna1efighter #rareneurologicaldisorder #raregeneticdisorder #raregeneticdisorders #raregenes #rareepilepsy #epilepsy #epilepsywarrior #medicalmama #medicalmamas #hospitallife🏥 #lifewithdisabilities #childrenwithdisabilities #lifewithjago #jagosjourney #littlewarrior #littlefighter
Us "Zebras" deserve recognition, respect, and the same quality of medical care as those individuals with more "normal" medical needs. The majority of people with EDS spend decades being gaslit, ignored, accused of faking symptoms, and being passed from one physician to another only to be given up on because our situation is "too complicated" to deal with. There is more EDS awareness now than there was just a few years ago... but there needs to be MORE, especially in the medical community. I myself didn't get my diagnosis until age 40 and I still know more about it than most doctors I meet. The sooner a diagnosis is made, the sooner measures can be taken to slow the spread of tissue damage. There is currently no cure for it, but I have hopes for the future. Please share this with as many people as you can. People's lives and wellbeing depend on widespread understanding and awareness of this rare and debilitating disorder. #ehlersdanlossyndrome #ehlersdanlosawareness #ehlersdanlos #raredisease #zebrasunite #zebra #edsawareness #hopeforthefuture #celebrateuniqueness #weexist #weareunited #neverlosehope #nevergiveuphope #fightforthecure #rarediseaseawareness #rarediseases #beseen #geneticdisorder #geneticdisorders #raregeneticdisorder #raregeneticdisorders
Minor malformations are relatively common in babies and include physical alterations that have no substantial medical or cosmetic consequences. A major malformation (also called a birth defect) is one that does have medical or cosmetic consequences. Examples include a heart defect, an underdeveloped or absent organ, or a cleft lip, to name a few. If you were born with a major malformation or multiple minor ones, this may indicate a genetic disorder that could lead to (or have already caused) other complications. SequenceMD is committed to keeping patients informed about any potential genetic disorders and receive the personalized care they deserve. Download a copy of the Genetic Testing Red Flags Checklist here: https://tinyurl.com/3xt7um8r #SequenceMD #TenGeneticDiseaseRedFlags #adultgenetics #geneticdiagnosis #raredisease #raregeneticcondition #inheritedgeneticconditions #symptoms #genetictesting #genetics #caremanagement #diagnosis #raredisorders #neurogenetic #raregeneticdisorders #metabolicconditions #chromosome15 #geneticdisorders #AngelmanSyndrome #Duplication15q #PraderWillisyndrome
Getting interviewed by John Ray for @northfultonbrx was such a joy! I loved sharing more about my personal NF2 diagnosis story and why I founded @beingpositioned ❤️ Click the link in our bio to listen to the podcast! 🎧 #endnf #beingpositioned
🌟 Let’s Spread Hope Together! 🌟 Hey Insta fam! Did you know you can be a superhero of hope? 💪 At the PTLS Hope Research Foundation, we’re all about making a difference, and your support can help us do just that! Your donations keep our wheels turning and our hearts full. They fuel our research, raise awareness about PTLS, and bring us one step closer to finding new treatments and support systems for those affected. With your generosity, we can team up with top researchers and medical professionals to make some serious waves in the PTLS community. Every dollar you give helps us drive forward and make a real impact in the lives of individuals battling this rare genetic disorder. So, are you ready to help us make a change? Let’s join forces, spread the word, and bring hope to those who need it most. Be the Hope! 💚 Find the link to donate in our bio!🙌
“I explain that now, when someone asks me why I cry so often, I say, ‘For the same reason I laugh so often — because I’m paying attention.” -Glennon Doyle Send lots of 🫂 in the comments 🔽 #specialneedsparenting #raregeneticdisorders #autismfamily #medicallycomplexchild #singlemomstrong #livingkidneydonor #kidneytransplantrecipient
Intellectual or developmental disabilities may be related to a genetic disorder. Even if you previously received care for your disability, you may have an untreated underlying disorder that predisposes you to other problems and could explain any current issues you’re experiencing. At SequenceMD, you can receive genetic testing and evaluation that could help you get the ongoing specialized care you deserve. We’re dedicated to helping our patients remain healthy and informed so that they can take the proper next steps with their disorders. Download a copy of the Genetic Testing Red Flags Checklist here: https://tinyurl.com/3xt7um8r #SequenceMD #TenGeneticDiseaseRedFlags #adultgenetics #geneticdiagnosis #raredisease #raregeneticcondition #inheritedgeneticconditions #symptoms #genetictesting #genetics #caremanagement #diagnosis #raredisorders #neurogenetic #raregeneticdisorders #metabolicconditions #chromosome15 #geneticdisorders #AngelmanSyndrome #Duplication15q #PraderWillisyndrome
We had really hoped that we would be having a break from hospital admissions for a while, but here we are again 😩 Jago has caught another virus (when will this winter hell end), and with him being so vulnerable it has once again ended in a hospital stay. Thankfully we know the signs now so we have got him in quick, and hopefully that means he will be out quick. Just in time for Easter and his first birthday 🐰 🎂 🎈 It doesn’t get any easier seeing his little body attached to wires, but we know sometimes he just needs a little help to get his strength back and be comfortable at home. As much as we want him with us all the time, we have to make sure we ask for help when he needs it to keep him safe. Please send positive thoughts our way that he will be back where he belongs soon 🌟 🙏🏻 Then lets make it the last one for a while Jagys 🤞🏻 #cacna1e #cacna1efighter #hospital #hospitalstay #raregeneticdisorders #raregeneticdisorder #neurologicaldisorder #rareneurologicaldisorder #epilepsy #rareepilepsy #epilepsywarrior #littlewarrior #littlefighter #lifewithdisabilities #complexmedicalneeds #complexmedicalwarrior #jago #lifewithjago #jagosjourney #zebra #littlezebra #medicalzebra🦓
Miscarriages, particularly in the first trimester, are not uncommon. However, numerous unexpected miscarriages may point to a genetic modification, especially in combination with other genetic red flags. SequenceMD provides comprehensive health care that can inform you of potential genetic disorders you are not aware of. Download a copy of the Genetic Testing Red Flags Checklist here: https://tinyurl.com/3xt7um8r #SequenceMD #TenGeneticDiseaseRedFlags #adultgenetics #geneticdiagnosis #raredisease #raregeneticcondition #inheritedgeneticconditions #symptoms #genetictesting #genetics #caremanagement #diagnosis #raredisorders #neurogenetic #raregeneticdisorders #metabolicconditions #chromosome15 #geneticdisorders #AngelmanSyndrome #Duplication15q #PraderWillisyndrome
The program team was at it again! Last weekend, Casey, Emily, and Kepler were on the road at @holewallcamp to deliver some Next Step magic. They discussed self-confidence and building friendships while living with a serious illness. Thanks for hosting us! #IBelieveInMe #TheHoleintheWallGangCamp #Teens #YoungAdults #Cancer #HIV #RareGeneticDisorders #ChronicIllness #Community #Mentorship #MusicTherapy
Grab your tickets for CEREAL de Mayo! 🎟️ Our unique fundraiser is happening on Saturday, April 27th at 6 pm in Alpharetta, GA (near Avalon). Enjoy a delicious Tex-Mex dinner, while delighting in our bottomless cereal bar, offering a playful twist on a breakfast classic. 😋 Held in a one-of-a-kind space that feels like a movie set, it’s an experience not to be missed! 🎬 And we promise - you’ll love this crazy combo just as much as we do! 🌮🥣 Space is limited, so head to the link in our bio to grab your tickets today! #beingpositioned
If you have relatives who have been diagnosed with a genetic disease or you suspect a particular issue runs in your family, you may want to consider genetic testing even if you don’t have obvious symptoms. At SequenceMD, our goal is providing testing and evaluation that could reveal an undiagnosed condition and inform future decisions and behaviors, such as avoiding particular stressors, improving health monitoring and management, and deciding to grow your family. Download a copy of the Genetic Testing Red Flags Checklist here: https://tinyurl.com/3xt7um8r #SequenceMD #TenGeneticDiseaseRedFlags #adultgenetics #geneticdiagnosis #raredisease #raregeneticcondition #inheritedgeneticconditions #symptoms #genetictesting #genetics #caremanagement #diagnosis #raredisorders #neurogenetic #raregeneticdisorders #metabolicconditions #chromosome15 #geneticdisorders #AngelmanSyndrome #Duplication15q #PraderWillisyndrome
Jamison’s Story (written in 2008) Jamison was always a little ‘different’. He was slow hitting his developmental milestones. After many tests with doctors and developmental testing done by the Infant Toddler program he was diagnosed with PDD-NOS when he was 1 1/2 years old. Although he showed many signs of Autism I never felt like that was the only problem. I had always said to his Pediatrician that the diagnosis of Autism just seems to continue to be thrown around when he’s showing some signs of it but certainly not all. I know that in most cases it fits perfectly, but in Jamison’s case… I just never felt like it did. He did so many things that were not typical of it. I felt lost in the spectrum. I felt like the answers they were giving me were just not right… So I made an appointment with a Neurologist at Sacred Heart Medical Center in Spokane, Washington. It’s amazing how long the wait list is to see these specialists… it took me nearly 7 months just to get an initial consultation; and that’s where our story begins: Diagnosis: Potocki-Lupski Syndrome The articles I have found online told me about some of the health problems due to this chromosomal duplication: Low muscle tone –check Poor feeding –check (make that double check) Heart defects – not that we know of Developmental delay – check Speech and learning problems – check Autism – check Jamison didn’t change that day I got this information, the love from his family didn’t change when we got this information either, just what doctors and therapists call him. Just the medical description for that thing that makes him my little sweetheart, my little man, my miracle. It’s hard when you hear a doctor say “mental retardation”. Actually, it’s heartbreaking… but that won’t change my love for my beautiful son, that won’t take his smile away from his cute little face, and that certainly won’t take away my hope… 💚 Current update Jamison is about to turn 18 and lives in Coeur d’Alene, Idaho with his family. He has 4 other siblings and is an amazing big brother to them! He starts his senior year this fall. He has braces now, can you believe it?! No heart defect ever detected. He loves math and video games!
I have gotten a handful of new followers in the last couple of days so I thought I would introduce ourselves! My name is Genesis and my daughter’s name is Nyla. She was born with a rare brain condition called Lissencephaly which translates to ‘smooth brain’. She has the worst type of Lissencephaly because she has absolutely no folds in her brain. She also suffers from Lennox Gastaut Syndrome, hypotonia, feeding difficulties, and more. We currently are doing the Ketogenic diet to help her brain activity and also will be getting a Gtube in the next couple of weeks to help with the feeding difficulties that have happened. I am young 24 year old special needs mama that LOVES her cricut! It all started when my daughters 1st birthday was coming up and I just wanted to DIY as much as possible 😆 From there I made some shirts for the Lissencephaly Awareness Day which did amazing and started making awareness shirts for other conditions like PDCD. This journey of being a medical mama has not been easy. We have very hard days but we do have good days. I wanted to capture that in these designs that I have been making. I also keep in mind all of those who help us along this journey like therapist, nurses, teachers, or anyone! Doing this has really shown the beauty in all of the madness. I use the time that I make these designs to really reflect on that. I hope anyone that wears anything that I make sees the positivity in the life we have even when things are hard and low. If anyone ever needs a shirt for a birthday or vacation I can also do those too! I look forward to working with you! 🦄🤍✨💜🦓🩷 • • • • • #christianmom #specialneedsfamily #specialneedsmama #introduceyourself #jesuslovesyou #raregeneticdisorders #rarediseasemom #rarediseaseawareness #lissencephalywarrior #lissencephalyfamily #pediatrictherapy #pediatricepilepsyawareness #pediatricphysicaltherapy #pediatricoccupationaltherapy #dmi #ketodiet #ketodietforepilepsy #lennoxgastautsyndrome #epilepsyawareness #hypotonia #lowtone #hightone #afo #gtubelife #gtubeawareness #gtubekid
If you have symptoms that unexpectedly continue or worsen after standard treatment — or you develop new symptoms — you may have received an incomplete or incorrect diagnosis. Genetic testing and evaluation could identify an untreated underlying issue. SequenceMD is dedicated to ensuring all patients are properly diagnosed and informed of any potential genetic disorder. Download a copy of the Genetic Testing Red Flags Checklist here: https://tinyurl.com/3xt7um8r #SequenceMD #TenGeneticDiseaseRedFlags #adultgenetics #geneticdiagnosis #raredisease #raregeneticcondition #inheritedgeneticconditions #symptoms #genetictesting #genetics #caremanagement #diagnosis #raredisorders #neurogenetic #raregeneticdisorders #metabolicconditions #chromosome15 #geneticdisorders #AngelmanSyndrome #Duplication15q #PraderWillisyndrome
Rare genetic disorders often come with subtle or nonspecific symptoms, making early diagnosis difficult. Genetic testing is a pivotal step that facilitates the early and accurate diagnosis of such disorders. Whole Exome Sequencing from First Genomix, is a specialized test driven by highly advanced NGS technology that scans the body’s more than 20,000 genes, to identify abnormal genetic changes that drive disease. For more information on WES, contact First Genomix at 04-3443222, or email us at [email protected] . . . #raregeneticdisorders #raregeneticdisease #earlydiagnosis #ngstechnology #genes #geneticchanges
A primary disease arises spontaneously, meaning that it is in no way associated with or caused by any previous disease, injury or event. If you are impacted by two unrelated primary diseases, a genetic factor could be an explanation. At SequenceMD, our medical geneticists may be able to trace your diseases to a single cause, giving you a unified diagnosis that can lead to improved medical care. We’re dedicated to making sure you’re informed and aware of any possible genetic conditions you may have. Download a copy of the Genetic Testing Red Flags Checklist here: https://tinyurl.com/3xt7um8r #SequenceMD #TenGeneticDiseaseRedFlags #adultgenetics #geneticdiagnosis #raredisease #raregeneticcondition #inheritedgeneticconditions #symptoms #genetictesting #genetics #caremanagement #diagnosis #raredisorders #neurogenetic #raregeneticdisorders #metabolicconditions #chromosome15 #geneticdisorders #AngelmanSyndrome #Duplication15q #PraderWillisyndrome
Dan svého brášku miluje! A občas mám pocit, že miluje je slabé slovo.... Včera to měl zase rád. "Mami, kde bere Dan pořád tu energii?" "Nevím, Matýsku. Podle mě má někde solární panely." "A kde?" "To nevím...." "A kde se vypíná?" "Nevím...." " A víš vůbec něco?" 🤣🤣🤣 Otázka do pranice..... #angelmansyndrome #angelman #raregeneticdisorders #everydaylifewithangel #brotherslove
Dnes je po delší době byli u rehabilitační doktorky. Paní doktorku mám moc ráda, vždy je dobře naladěná, má pochopení a trpělivost, všechno nám vysvětlí a nespěchá na nás. Dan má spadlé klenby, pravá je o dost horší než levá. Naštěstí mě paní doktorka uklidnila, že nehrozí, že by kvůli tomu přestal Dan v budoucnu chodit. Vzhledem k tomu, že ortézy Dan netoleruje, doporučila nám zkusit speciální ortopedické vložky.... protože lepší malá podpora klenby než žádná. Počítala jsem s tím, že Dan nebude chtít čekat a tak jsem mu sebou vzala telefon. Vlastně nebyl potřeba. Během 15 min než na nás přišla řada, jsme prochodili čekárnu x krát sem a tam. 4000 kroků za pár minut 😏🤷 Nakonec se Dan zastavoval u dveří a mával lidem v čekárně "za rohem". Sedl si až na úplném konci, asi na 5 minut, než nám paní doktorka přinesla zprávu a poukaz. A víte, co mi udělalo fakt radost? Ve zprávě máme poprvé napsáno "...i přes motorický neklid, relativně dobrý kontakt a spolupráce při vyšetření" ❤️❤️ to nám do zprávy ještě nikdy nikdo nenapsal a možná ani nenapíše.... #angelmansyndrome #angelman #raregeneticdisorders #everydaylifewithangel
Many diseases (cancer for example) are more likely to occur in one location than two. If multiple organs or areas of your body are impacted, it could suggest a genetic cause. In medical terms, the condition may be bilateral (occurring in both of a pair of organs such as eyes, breasts, lungs, etc.) or multifocal (arising in multiple places/with multiple focuses). For example, if a patient has bilateral tumors in both eyes, a genetic cause is more probable than in the case of someone with a tumor in one eye. SequenceMD can assess these symptoms, give you a proper diagnosis, and help with your decision-making on next steps. Download a copy of the Genetic Testing Red Flags Checklist here: https://tinyurl.com/3xt7um8r #SequenceMD #TenGeneticDiseaseRedFlags #adultgenetics #geneticdiagnosis #raredisease #raregeneticcondition #inheritedgeneticconditions #symptoms #genetictesting #genetics #caremanagement #diagnosis #raredisorders #neurogenetic #raregeneticdisorders #metabolicconditions #chromosome15 #geneticdisorders #AngelmanSyndrome #Duplication15q #PraderWillisyndrome
The stages of contentment, shock and relief when you find out you’re going home after four months post transplant!!!! We are so elated to share that we are officially going home! Cash’s MRI did not show any signs of bile duct damage and his LFTs made a remarkable turnaround based on today’s labs. The doctors are encouraged this is due to the new immunosuppressant. The liver is a remarkable and complex organ. And Cash’s overall health picture is very similar which is why the diligence in monitoring this fibrosis diagnosis has been so crucial. We are very relieved the testing and imaging is on hold for now. It’s been a long road since November (?!?!?) and we can’t believe a whole season passed since we stepped foot in our home, but we are so grateful to have come this far. To say Cash is a trooper is an understatement. We can’t wait to bring him home and see how much he will continue to thrive. Thank you all for following his journey. 💚💚💚 #letsgo #transplantwarrior #raregeneticdisorders #cdgawareness #grateful #livertransplant
Disability book review! This one, by American pediatrician Dr. Kelly Fradin of @adviceigivemyfriends had been in my TBR pile for a while, and I’m so glad that it finally came to the top. Not specific to any single illness or disability, Advanced Parenting helps cultivate a mindset and discover tools for parenting a child with complex medical, developmental, or mental health needs. Through stories and examples, Dr. Fradin lets you see your own situations and challenges reflected in those of other families. I would recommend this read particularly to those who are new to this complex parenting journey, but anyone could benefit from a boost of knowledge about advocacy for both their child and themselves. While some information was a little USA-centric, I still found the less location-specific content helpful. Thank you Dr. Fradin for this awesome addition to my disability toolkit bookshelf! #medicallycomplex #medicallycomplexkids #medicallycomplexwarrior #medicallycomplexbaby #medicallyfragile #medicallyfragilekids #tubielife #tubiebaby #tubiemom #gtubebaby #gtubelife #gjtube #gjtubekid #infantilescoliosis #infantilespasms #infantilespasmsawareness #scoliosisstrong #mehtacasting #rissercast #epilepsykidscrew #raregeneticdisorders #rarediseasemom #pierrerobinsequenceawareness #pierrerobinsequencebaby #disabilitybooks #disabilitybook #disabilitybookrecs
Most diseases have risk factors that can include things like diet, exercise, stress, drug and alcohol use, and exposure to certain environmental conditions. If you’ve been diagnosed with a disease but lack the common risk factors, something else may be at play. It’s possible your disease has a genetic cause or that your current diagnosis is wrong or incomplete. Either way, SequenceMD is here to help you investigate it and take the proper next steps. Download a copy of the Genetic Testing Red Flags Checklist here: https://tinyurl.com/3xt7um8r #SequenceMD #TenGeneticDiseaseRedFlags #adultgenetics #geneticdiagnosis #raredisease #raregeneticcondition #inheritedgeneticconditions #symptoms #genetictesting #genetics #caremanagement #diagnosis #raredisorders #neurogenetic #raregeneticdisorders #metabolicconditions #chromosome15 #geneticdisorders #AngelmanSyndrome #Duplication15q #PraderWillisyndrome
Potocki-Lupski Syndrome 101 Let’s dive in🤓 Potocki-Lupski Syndrome is a condition that results from having an extra copy (duplication) of a small piece of chromosome 17 in each cell. The duplication occurs on the short (p) arm of the chromosome at a position designated p11.2. Scientists know that the RAi1 gene is duplicated in this area. The RAi1 encodes a dosage-sensitive gene. The over expression of the RAi1 gene is known to be the cause of the symptoms we see in individuals with PTLS! Want to learn more? Visit www.ptlshope.org 💚
"It's been amazing to see the impact their programs have on the young people who attend them. The self confidence they gain, being able to achieve their goals and realize that their diagnosis doesn't dictate who they are or what they can do, it's been eye opening. As long as they continue to let us walk the 7 miles, I'll be a part of Team Next Step!" ~@jbeachp , 4 year member of Team Next Step The 52nd @falmouthroadrace is being held on August 18th! Team Next Step is looking to fill in its last few spots, so if you're up for a 7 miler we've got you covered! Be a part of this great race and support the teens and young adults who rely on Next Step's free programs. Join us in Falmouth on the 18th or run, or walk, the 7 miles your own way. Visit the link in our bio to sign up! #IBelieveInMe #FalmouthRoadRace #Teens #YoungAdults #Cancer #HIV #RareGeneticDisorders #ChronicIllness #Community #MusicTherapy #Mentorship
💓 Lucy Landman's story will touch your heart. Together with her Mom, Dad and two sisters, 💪Lucy is fighting against a rare genetic disorder called Mabry Syndrome. 🙌The Landman family has made strides in research and raising funds for research and treatment that will benefit, not only their daughter, but so many other children who are born with this disorder. 😍 You can follow Lucy's progress @lucythepgap3goose. Read more about the Landmans, their promising progress with gene therapy and the nonprofit organization, 🌙Moonshots for Unicorns🦄, they founded. Visit greetlafayette.com for the full article in our March issue of Greet Lafayette. 📸Photo courtesy of @craigi of BlueGoo Photography Special thanks to 💖@stellaandstephanie realtors for sponsoring the Meet Our Neighbor section.
Diseases or disorders that occur or progress at an earlier age than expected may be tied to your genetics. For example, Parkinson’s disease is most common in men over the age of 60. If you have an earlier onset, there is a higher chance of a genetic cause. Sequence MD allows for comprehensive testing and diagnosis of your genetics and helps you find the best next step. To learn more, download a copy of the Genetic Testing Red Flags Checklist here: https://tinyurl.com/3xt7um8r #SequenceMD #TenGeneticDiseaseRedFlags #adultgenetics #geneticdiagnosis #raredisease #raregeneticcondition #inheritedgeneticconditions #symptoms #genetictesting #genetics #caremanagement #diagnosis #raredisorders #neurogenetic #raregeneticdisorders #metabolicconditions #chromosome15 #geneticdisorders #AngelmanSyndrome #Duplication15q #PraderWillisyndrome
Víkend byl náročný. Dan byl celou sobotu protivný a k večeru se ukázalo, že na něj něco leze. Podle toho vypadala i noc na neděli. Vstával už kolem druhé a do dalšího spaní se mu moc nechtělo. Teplotu neměl, spustila se mu rýma a vrtěl se neobvykle až tak moc, že jsme mu raději dali Panadol. Obvykle to totiž bývá známka toho, že ho bolí celé tělo. Usnul až před půl pátou a já s ním. Ovšem než usnul polohu měnil tak často, že dalo dost práce zůstat trpělivá. Chtěl se lehat na mojí hlavu - i to je u Dana známka toho, že mu není dobře, aranžoval mi ruce , nohy mi dával mezi stehna a chtěl , abych mu hladila chodidla, pokoušel se mi tahat krkem (což dost bolí) a pořád mě držel aspoň za jednu ruku. Nedělní odpoledne už bylo ve znamení Danova mokrého trička, mých tepláků a každého polštáře, na který si Dan lehl. Momentálně má teplotu, nudle jak švihadlo a vrtí se v posteli. A já doufám, že aspoň část noci bude spát sám.... #angelmansyndrome #angelman #raregeneticdisorders #everydaylifewithangel
The last two weeks have been a whirlwind for us, and we are all completely exhausted 😴 We have had another 5 night hospice stay to try and manage Jago’s symptoms, a hospital appointment (thankfully we weren’t admitted) and after nearly a year of maternity leave I started back at work this week full time. I feel very lucky as I love my job, but I’ve been very anxious as Jago still isn’t very well and I wish more than anything we were in a better place 😩. Oh and just to add to the drama we exchanged on our new house this week and will be moving within the next 2 weeks 🥴. I’m not complaining about this though as we are desperate for a fresh start 🏡🫶🏻 Despite increases in medication Jago’s seizures are still happening daily and his Dystonia is still causing him pain, all that’s changed is he is completely knocked out and sleeping most of the time. It’s makes us so sad as we just want to see him engaging with us and smiling again. However, it’s the lesser of two evils at the moment as when he is sleeping he is resting and free from pain. All we can do is hope that his tolerance builds up and there will be a light at the end of the tunnel soon, we desperately need it. For now it’s just lots of cuddles, kisses and love for our boy ✨💙 #cacna1e #cacna1efighter #raregeneticdisorders #raregeneticdisorder #raregeneticconditions #rareneurologicaldisorder #rareepilepsy #epilepsy #epilepsywarrior #seizures #dystonia #dystoniawarrior💙 #littlefighter #littlewarrior #jago #jagosjourney #lifewithjago
It’s been maybe five months since Augie has fallen asleep on one of us that I can remember. He doesn’t do this anymore. When he’s ready to sleep he lets us know that he doesn’t want to be held anymore and is ready for his crib or pram if we are out. He knows what he wants and lets us know. So in the midst of a big cleaning day he decided to sleep on me it made me so happy. It was the best twenty minutes and a fantastic break from cleaning. #smithmagenissyndromeawareness #smithmagenis #sindromesmithmagenis #smithmagenissyndrome #raregeneticdisorders #raregeneticdisorder
Many patients turn to medical geneticists after months or years of searching for the correct diagnosis. These patients have seen multiple specialists and participated in tons of tests. Despite the exhaustive workups, some symptoms are overlooked or don’t receive proper attention. Some patients have no diagnosis … others have one that seems wrong or incomplete. Genetic testing and evaluation could reveal a rare disease or rule out a known genetic cause for these patients. SequenceMD is dedicated to helping diagnose and manage rare and inherited genetic conditions. If you have struggled to find answers to your symptoms, please read our Ten Genetic Disease Red Flags article, so you can take an informed next step. Download a copy of the Genetic Testing Red Flags Checklist here: https://tinyurl.com/3xt7um8r #SequenceMD #TenGeneticDiseaseRedFlags #adultgenetics #geneticdiagnosis #raredisease #raregeneticcondition #inheritedgeneticconditions #symptoms #genetictesting #genetics #caremanagement #diagnosis #raredisorders #neurogenetic #raregeneticdisorders #metabolicconditions #chromosome15 #geneticdisorders #AngelmanSyndrome #Duplication15q #PraderWillisyndrome
"It's been an honor to race for Next Step over the years. These races gift me with the ability to raise awareness and funds for an organization that in turn changes the lives of so many. From small gestures to gargantuan efforts, Next Step's work extends beyond the individual, creating a supportive community that understands and embraces the journey of each participant." -@fortitudeandfire , long time member of Team Next Step Next Step is looking for more runners to join us on August 18th for the 52nd @falmouthroadrace ! You can join us down in Falmouth on the day of the race or you can run the 7 miles your own way, wherever you are! Visit the link in our bio to join Team Next Step! #IBelieveInMe #FalmouthRoadRace #Falmouth #RoadRace #TeamNextStep #Teens #YoungAdults #Cancer #HIV #RareGeneticDisorders #ChronicIllness #Community #Mentorship #MusicTherapy
Mommy’s Soldier Boys ❣️ #TreatmentDay #IVIGInfusion #BrutonsAgammaglobulinemia #RareGeneticDisorders #XLA #StrongBoys #BabyBoys #AnakinJhakari #AshtonJiraiya #HappyBabies #CoolKids