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
New possibilities: How Caden learned to manage chronic pain — and found an unexpected path
In October 2020, Caden Deutsch started feeling sick. Although the 17-year-old had been coping with juvenile idiopathic arthritis since he was in sixth grade, this was different. By the following year, what had begun as brief episodes of gastrointestinal discomfort had progressed to constant, excruciating pain. “I’d been living with chronic joint pain for years, ... Read More about New possibilities: How Caden learned to manage chronic pain — and found an unexpected path
A lifetime of treatment inspires Ruth to advocate care for others
Ruth Ngwaro offers guidance to children who have heart disease. Perhaps her most useful bit of advice is telling them to not look too far ahead in their lifelong journeys and instead focus on what they can do each day. She would know: Throughout childhood and well into adulthood, Ruth was in and out of ... Read More about A lifetime of treatment inspires Ruth to advocate care for others
Un verdadero corazón de oro: El viaje de Jeremiah hacia un trasplante de corazón
Con las sirenas sonando, Angelie y su esposo atravesaron el tráfico a toda velocidad, ansiosos por llegar a tiempo a la ciudad. La escolta policial que tenían delante les despejó el camino, lo que les permitió trasladarse rápidamente al Boston Children’s Hospital, donde los esperaba su hijo de 6 años, Jeremiah, apodado JJ. Si Angelie ... Read More about Un verdadero corazón de oro: El viaje de Jeremiah hacia un trasplante de corazón
A true heart of gold: Jeremiah’s heart transplant journey
With sirens wailing, Angelie and her husband sped through traffic, anxious to get to the city in time. The police escort ahead of them cleared the way, allowing for a speedy commute to Boston Children’s Hospital where their 6-year-old son, Jeremiah — nicknamed JJ — was waiting for them. If Angelie hadn’t waved down the ... Read More about A true heart of gold: Jeremiah’s heart transplant journey
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