Hip pain resolved, Louise takes steps to become a surgeon
Louise Atadja couldn’t remember the last time her two big toes touched. Ever since she was born, her feet rotated out. As she got older, the outward position of her feet became more pronounced. “It caused me to walk strangely and run weirdly,” says the former track star who excelled in her sport even though ... Read More about Hip pain resolved, Louise takes steps to become a surgeon
Against all odds: Mila’s unique mutation, and her own custom drug
Ed. note: Mila passed away in February 2021, at age 10. The Mila’s Miracle Foundation continues to work to pave a pathway for personalized treatments. The FDA recently released a draft guidance on testing custom drugs such as Mila’s in patients. As a baby and toddler, Mila was healthy, active, and — in some ways ... Read More about Against all odds: Mila’s unique mutation, and her own custom drug
An education in hemophilia for Colin’s new school
Every morning, one of Colin Bazinsky’s parents puts a needle into his chest to give him an infusion of clotting factor. You wouldn’t guess anything was amiss from the placid look on the 3-year-old’s face as he receives the infusion to treat his hemophilia. His state of calm reflects his parents’ matter-of-fact approach to the ... Read More about An education in hemophilia for Colin’s new school
Second opinion gives Charlotte a second chance
After struggling to conceive their second child, Jennifer and Keith Bent were thrilled when Jennifer became pregnant. The results of genetic testing were normal and confirmed they would be welcoming a daughter in April of 2016. Jennifer felt the baby’s first kicks on Nov. 23, 2015. The next day, she was scheduled for an anatomy ... Read More about Second opinion gives Charlotte a second chance
Saif looks ahead to life after spine surgery
Saif and his mother, Khawha Abbas, both had questions for Dr. Daniel Hedequist. For the past nine months, the family had lived in Boston while Saif underwent treatment for a severe spinal deformity. They were scheduled return to the United Arab Emirates (UAE) that evening, but first, Saif wanted to know if he would be ... Read More about Saif looks ahead to life after spine surgery
A sign of Faith in one little girl’s single ventricle journey
Nicole and Charlie Parker were no strangers to adoption when they embarked on the journey to bring their daughter Faith home from Langfang, China — they had previously adopted two of their four children. What they were not familiar with was raising a child with a complex congenital heart condition. Faith was born with a ... Read More about A sign of Faith in one little girl’s single ventricle journey
Not all heroes wear capes: Taking on dyskeratosis congenita
When Mason Langlais argues with his sister, Jillian, he regularly repeats a mantra. “I’m the rare one,” he says. “So, you can’t treat me like this.” “Rare” and “one in a million” — those are just a few of the words his mom, Jenn, uses to describe her 7-year-old self-proclaimed super hero. It’s how she ... Read More about Not all heroes wear capes: Taking on dyskeratosis congenita
Back from the brink: How Boston Children’s saved my life
I was first rushed to Boston Children’s Hospital on my very first night of summer vacation in June 2015. I had been at an eighth-grade graduation party when a brain aneurysm caused by an AVM (arteriovenous malformation) ruptured. All the blood and swelling in my head generated the worst headache I had ever felt. I ... Read More about Back from the brink: How Boston Children’s saved my life
Following clinical trial, boy with Fanconi anemia transfusion free
Seven-year-old Ervis of Chicago, Illinois, is a model student with a positive attitude and a megawatt smile. His mom Ofelia calls him “un encantador” — “a charmer,” but life as Ervis knows it is not exactly charmed. Born with Fanconi anemia (FA), a rare hereditary blood disorder that can lead to bone marrow failure and cancer, ... Read More about Following clinical trial, boy with Fanconi anemia transfusion free
Gavin: My Crohn’s disease story
When I was 10 years old, I was diagnosed with Crohn’s disease. For a few months at the end of fourth grade, I didn’t feel well on and off. I was having stomach pains and diarrhea a couple times a week. In June I went to see my doctor and she thought I was developing ... Read More about Gavin: My Crohn’s disease story