Archive for Katie Paradis
Lessons from Emma: Mom shares how RNS has changed their lives
Emma’s journey with the Epilepsy Center at Boston Children’s Hospital began three years ago when she came to Boston Children’s with her parents for help managing her seizures. In Boston, Emma, Lynda, and Danny found answers to their questions, a (temporary) new home, and hope for Emma’s future as she embarked on responsive neurostimulation (RNS) ... Read More about Lessons from Emma: Mom shares how RNS has changed their lives
How genetic testing helped Wilson help other infants with epilepsy
In August 2021, after months of anticipating their son’s arrival, Emily and Nick felt as ready as they’d ever be to become parents. Happy and excited to finally have Wilson in their arms, they brought him home a few days after delivery. Just over 24 hours later, though, they found themselves back in a hospital ... Read More about How genetic testing helped Wilson help other infants with epilepsy
Homecoming: Jack’s complex care brings a family back to Massachusetts
Georgia and her husband, Keith, moved to North Carolina from Massachusetts in 2015 with a dream of building a house and starting a family. Their plans changed, however, when their son Jack was born in 2017 with severe health complications, including a rare and severe form of childhood epilepsy called Lennox-Gastaut syndrome and a rare ... Read More about Homecoming: Jack’s complex care brings a family back to Massachusetts
A model patient: Alexia’s triumph over moyamoya disease
If you’re lucky enough to get time on Alexia’s packed schedule, you’re in the company of a motivated and ambitious young woman who — in the face of a scary diagnosis — shows others they can do anything they put their mind to. From subtle symptoms to diagnosis Alexia’s fight against moyamoya disease, a rare ... Read More about A model patient: Alexia’s triumph over moyamoya disease
Defying the odds: Cruise’s triumph against cavernous malformations and debilitating headaches
As a toddler, Cruise — now 13 — faced a rare cancer diagnosis that came with an 11 percent chance of survival. But with his trademark resilience and strength of spirit, Cruise defied the daunting odds and beat his cancer. The battle left its mark though — in the form of cavernous malformations in his ... Read More about Defying the odds: Cruise’s triumph against cavernous malformations and debilitating headaches
Breaking records and setting goals: Grant charts his own course with Bockenheimer syndrome
Grant Pierce has his sights on premed when he arrives at the University of Illinois this fall. He hopes to become a reconstructive surgeon and help people with injured or ill limbs enhance their mobility. Grant’s field of study is a personal one, as he’s spent his life in and out of the hospital receiving ... Read More about Breaking records and setting goals: Grant charts his own course with Bockenheimer syndrome
Thinking – and operating – outside the box: Bypassing Saoirse’s aneurysm
Saoirse just turned 3. There was a big to-do for her birthday, complete with family flying to Massachusetts from Ireland for the occasion. The celebration was big because Saoirse has a lot to celebrate. About six months ago, doctors discovered an unstable aneurysm in her brain, and within days she underwent surgery to treat the ... Read More about Thinking – and operating – outside the box: Bypassing Saoirse’s aneurysm
Overcoming microtia, atresia, and speech challenges: Braelyn’s story
Eight-year-old Braelyn is a sweet, confident kid who loves everyone, dotes on her little sister Kamryn, does well in school, and never stops moving. Her parents, Danielle and Joseph, are incredibly grateful to see their daughter happy and thriving, especially after the long road it took to get here, including pharyngeal flap surgery and ear ... Read More about Overcoming microtia, atresia, and speech challenges: Braelyn’s story
A family’s search for answers and hope for PACS1 syndrome
Alya, 9, was about three weeks old when her mother, Taruna, noticed movements and behaviors she was concerned might be seizures. What followed were multiple hospitals, multiple tests, and eventually a diagnosis of PACS1 syndrome. This rare genetic neurodevelopmental disorder can lead to intellectual disabilities and delays and currently has no cure. “We were told to ... Read More about A family’s search for answers and hope for PACS1 syndrome
Varsity blues: How AVM radiation therapy got Greta back to sports
Want to find Greta? Try the hockey rink, or softball field, or volleyball court. Where won’t you find her? Sitting on the sidelines — at least not anymore. After a tough year receiving treatment at Boston Children’s Hospital for a tangled cluster of blood vessels in her brain, known as an arteriovenous malformation (AVM), Greta’s ... Read More about Varsity blues: How AVM radiation therapy got Greta back to sports