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Aisha’s family came to Boston Children’s from Bahrain after years of searching for answers about her involuntary movements.
Her care team in the Movement Disorders Program eventually considered whether deep brain stimulation (DBS) could help. In 2024, Aisha underwent a DBS procedure and has since gained greater mobility and improved control of her movements.
Her experience is also helping doctors around the world better understand DBS for children with rare movement disorders.
Learn more: answers.childrenshospital.org/adcy5-dbs/
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Things Caelan is back to thanks to deep brain stimulation (DBS) and support from the Movement Disorders Program:
• Traveling✈️
• Playing video games 🕹️
• Cheering for the Bruins🏒
Caelan is living with PKAN, an extremely rare genetic disorder that causes progressive loss of muscle movement. DBS helps regulates the brain signals that control movement.
After watching his story, learn more about the Movement Disorders Program here: ms.spr.ly/6183aKYz5
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“What was it like at that point to hear my voice?”
“The greatest gift I could ask for.”
Those are the words of Alice, a patient of Boston Children’s Augmentative Communication Program, who used AI voice cloning to help recreate her voice.
For decades, John Costello, Director of the Augmentative Communication Program, has helped patients find ways to communicate. Now, in collaboration with ElevenLabs, he and his team are exploring how AI can help patients preserve and recreate their voices safely and responsibly. The team is also developing guiding principles to help address important ethical considerations around AI voice cloning, including consent, privacy and patient autonomy.
Read more about Alice’s story and the team’s work to advance safe and responsible AI voice cloning in this WBUR 90.9 FM article ⤵️
She lost her voice to cancer. She brought it back using AI
ms.spr.ly
Cancer took away Alice Harty’s ability to speak. She's one of a growing number of people who have turned to AI to replicate their voice.0 CommentsComment on Facebook
Attending camp? 🏕️ Check. Potty training? 🚽 Check. Weaning off the feeding tube her parents were once told she’d need indefinitely? Three-year-old Remi has accomplished that too — with some help from Dr. Rachel Rosen and the team in our Aerodigestive Center. Read her story ⤵️
‘We’re gonna start over’: Finding the right care for Remi’s aspiration | Boston Children's Answers
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Patient Stories | Three-year-old Remi has weaned off her NG tube and improved her aspiration with some help from our Aerodigestive Center.3 CommentsComment on Facebook
More than 25 years ago, Kristin came to our Vascular Anomalies Center seeking treatment for a rare condition called blue rubber bleb nevus syndrome. That’s where she met Dr. Steven Fishman: The surgeon who transformed her life. Here, she reflects on her journey ⤵️
Living fully: Kristin’s life with blue rubber bleb nevus syndrome
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Over 25 years after an 11-hour surgery for blue rubber bleb nevus syndrome, Kristin's living a full, healthy life.2 CommentsComment on Facebook
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.