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
Learning to speak with the help of a bone-anchored hearing system: Owen’s story
Why does 4-year-old Owen love Ghost Spider? For one thing, her suit has purple highlights. For another, her hand forms the sign for ‘I love you’ whenever she casts a web. These reasons say a lot about Owen: a loving kid who knows American Sign Language (ASL) and whose favorite color is purple. For several ... Read More about Learning to speak with the help of a bone-anchored hearing system: Owen’s story
The best decision: Triplet Jayden is thriving after CDH repair
Jayden is barely a year old, but he’s already been through more ups and downs than some adults. Born at just 27 weeks — along with his brothers Jacob and Jamari — he’s overcome tremendous odds, not just as a triplet and preemie, but because he was born with a serious condition called congenital diaphragmatic ... Read More about The best decision: Triplet Jayden is thriving after CDH repair
My story of bouncing back from osteochondritis dissecans
Injuries suck — no better way of putting it. The physical pain is terrible on its own, but emotionally they can hurt even more. The frustration that comes with something that is out of your control is like nothing else. It makes you realize how much you take your health for granted until you lose ... Read More about My story of bouncing back from osteochondritis dissecans
Treatment for the vision condition achromatopsia helps Aiden embrace the outdoors
A lot of things excite 10-year-old Aiden Flaherty: drums, soccer, skiing, video games. But lately, he’s also found joy in a quieter, less active pursuit: watching leaves move on trees. He loves being outdoors during the daytime and taking in all that nature offers. It’s something he only recently could do after receiving retinal gene ... Read More about Treatment for the vision condition achromatopsia helps Aiden embrace the outdoors
Blood donations help Kit manage Diamond-Blackfan anemia — so she can dance, sing, and enjoy life
Every month, Kit Murdoch needs a blood transfusion to stay alive. The 2-year-old has Diamond-Blackfan anemia, a rare genetic blood disorder that, if untreated, prevents blood from delivering oxygen through the body. While it has been a devastating diagnosis for Kit’s parents, they’re grateful for the specialized care she receives and are constantly amazed that people ... Read More about Blood donations help Kit manage Diamond-Blackfan anemia — so she can dance, sing, and enjoy life
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
How hearing aids opened up a world of sound for Harry
Maybe it’s unusual to bring a musical instrument to an audiology appointment, but that didn’t stop Harry King. When he picked up his new hearing aids from Boston Children’s Hospital, he brought his ukulele. After a procedure to drain fluid from his middle ears the year before, Harry had become obsessed with sounds of all ... Read More about How hearing aids opened up a world of sound for Harry
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