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Last year we introduced you to Alya, an inspiring young girl who came to the Epilepsy Center to treat PACS1 syndrome, an extremely rare neurodevelopmental disorder that causes. We recently received an update from her mom, Taruna, and just as we thought: there’s been no slowing Alya down!
“Alya continues to make progress with her communication device, remains mostly seizure-free, loves school, and is keeping up with her therapy schedule. She had a fantastic time skiing this winter and enjoyed a wonderful summer traveling around Europe.” 🌎🎿👇 #EpilepsyAwarenessMonth
A search for answers for PACS1 syndrome
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When young Alya was diagnosed with a rare genetic disorder called PACS1 syndrome, her family launched an international search for answers.51 CommentsComment on Facebook
Are we seeing double?! 🤩 Nope, that’s just our friend Jeremiahs checking out his photos around the hospital! Jeremiahs’ story is an incredible one — he received a successful heart transplant but had quite the journey to get there. ❤️🩹 We’re so glad you’re happier than ever, Jeremiahs! Read his full story here: ms.spr.ly/6186WtUMu
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God bless 🙌 🙏 ❤️
Amen 🥹🫶🏻
My granddaughter’s picture is next to his! Thank God for the doctors, nurses, everyone at this great hospital and especially to the donor’s family for my Reagan. 💚🩷
Roblox has just rolled out a major update aimed at improving safety for younger users. The changes include stronger parental controls, enhanced moderation tools, and more transparency to ensure a safer online experience. Michael Rich, MD, MPH, shares the details on how these updates will impact your child's playtime. Check out the full article from NPR here 👇
With new safety update, Roblox aims to boost protection for young gamers
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In an effort to address child safety concerns, digital gaming platform Roblox announced Monday that it is rolling out a major update to its safety features and parental controls.1 CommentComment on Facebook
never forget Boston children's stole Justina from her parents. allowed 1 hour a week for loving parents. pos doctors kidnapped their baby. legally.
Has your child been diagnosed with type 1 diabetes? If so, you may have a lot of questions. In our next YouTube Live event on December 4 at 12 p.m. EST, we’ve got answers. Tune in while our experts discuss the signs and symptoms of type 1 diabetes, share resources for families, answer questions from our viewers, and more. Subscribe now! ms.spr.ly/6184WttN8
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Family time has never looked better! Our Healthy in the City program is sharing top tips for your family to stay active and connected— away from screens! What are some ways your family likes to stay healthy together? ms.spr.ly/6187WtexH
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The history of cystic fibrosis diagnosis
In 1955, Dr. Harry Shwachman, head of Boston Children’s Cystic Fibrosis Clinic, developed the first practical sweat test to diagnose cystic fibrosis (CF). It involved encasing the patient’s body in a plastic bag to collect sweat, then using the pictured device to measure levels of salt in the sample. Cystic fibrosis causes sweat to be 2-5 times saltier than average. The sweat test allowed for much simpler and earlier diagnosis of CF, crucial to effective treatment. A version of it is still the main diagnostic tool used today.
Learn more about Boston Children’s Archives Program.