Archive for brain health
‘We’re going to Boston’: Why Aydan’s family temporarily relocated for craniopharyngioma care
One evening in October 2022, 2-year-old Aydan Arguello arrived at Boston Children’s Hospital. It wasn’t a routine visit, but instead the final stop in an urgent journey from his home in South Florida. Months earlier, the toddler had been diagnosed and treated for a large brain tumor — but it was a related concern that led ... Read More about ‘We’re going to Boston’: Why Aydan’s family temporarily relocated for craniopharyngioma care
All in it for Hudson: A family’s shared path with cavernous malformations
Three-year-old Hudson loves trucks and PAW Patrol. He’s a delightful blend of sweet, fun, and feisty, and — after a seizure on New Year’s Day led to an extended stay at Boston Children’s Hospital — he’s an inspiration to his parents, Gabrielle and Matthew. To Matthew specifically, Hudson provides a new look at his own ... Read More about All in it for Hudson: A family’s shared path with cavernous malformations
After surgery for a brain tumor, Jenny is moving ahead — and giving back
“It might sound weird,” says Jenny Eckert, “but I’m very grateful that I got hit in the face with a soccer ball.” A year and a half ago, Jenny, then 9, was playing soccer when she accidentally took a hit to the head — twice. Concerned about a possible concussion, her parents, Vanessa and Scott, brought ... Read More about After surgery for a brain tumor, Jenny is moving ahead — and giving back
A seat at the table: One family’s story of finding advanced care for hydrocephalus
To her parents, everything about 6-month-old Stella is a miracle. Rose and Vlad were ecstatic to learn they were expecting a baby after Rose was diagnosed with uterine fibroids. When Stella arrived months early, they were astounded by her ability to keep growing stronger. And when her doctors discovered a buildup of cerebral spinal fluid ... Read More about A seat at the table: One family’s story of finding advanced care for hydrocephalus
Celebrating the unexpected, Miley’s family navigates Apert syndrome
Miley is the first girl born into her family in almost a generation. Hearing the delivery team announce, “It’s a girl,” is a moment her mom, Nicole, and her dad, Mike, will always remember. “We just cried,” says Nicole. “I’ll never forget that moment.” But what they also discovered at delivery was something else they ... Read More about Celebrating the unexpected, Miley’s family navigates Apert syndrome
It takes a village and the world: Tariq’s care for Tourette syndrome
When your child is sick but you can’t figure out the cause or how to fix it, it can leave you feeling helpless and frustrated. It can also test how far you’ll go for answers. Just ask Salem of the United Arab Emirates (UAE), who moved with his family to Boston so his son Tariq ... Read More about It takes a village and the world: Tariq’s care for Tourette syndrome
Care for a prince: One family’s inspiring journey for encephalocele repair
To hear Peter and Eunice of Kenya tell the story of their son, Prince, is to hear about the power of hope, the best of humanity, and the interconnectivity that makes the world a small place after all. Hope in the hopeless In March 2022, Eunice was about five months into her pregnancy when a ... Read More about Care for a prince: One family’s inspiring journey for encephalocele repair
Writing the book on infantile spasms: Charlotte’s story
When Charlotte, 3, developed infantile spasms last year, her parents, Kate and Brett, entered a world they didn’t know how to navigate. Inspired by their daughter and the care she received at the Epilepsy Center at Boston Children’s Hospital, they set out to help other families facing similar experiences. Nervous parent instincts prove right “I ... Read More about Writing the book on infantile spasms: Charlotte’s story
All in the family: One family’s shared link to epilepsy and fight for answers
One of the wonders of parenthood is seeing the traits you pass along to your kids, like your eyes or your laugh. For the Anderson family, however, one shared trait is more complex: a mutation in the NPRL3 gene that leads to epilepsy. It took four generations to uncover the family’s genetic link to the ... Read More about All in the family: One family’s shared link to epilepsy and fight for answers
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