Virtual visits give Weston time to grow and thrive
For many kids and parents, staying home during the COVID-19 pandemic was a challenge. But for Weston Mahady and his family, social distancing was just what the doctor ordered. The slowed-down pace, time spent together — and access to virtual appointments with Boston Children’s specialists — allowed Weston to make developmental strides that once hadn’t ... Read More about Virtual visits give Weston time to grow and thrive
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
One day on the field, admitted to the ICU the next: Rob’s liver transplant journey
When you’re a teen, it’s not very common to worry about what’s going on inside your body — especially not about potential organ failure. For Rob, now 14 years old, that happened in the blink of an eye. One day, he was scoring goals in soccer and hanging out with his friends. But in just ... Read More about One day on the field, admitted to the ICU the next: Rob’s liver transplant journey
Lifechanging surgery brings Ann-Raleigh relief from VUR — and some new ‘besties’
When Ann-Raleigh Murthy travels to Boston from her home in Louisiana, she has a list of “must-dos.” Among the highlights: Ride the swan boats in the Public Garden, swing by her favorite chocolate shop, go shopping — and visit with Dr. Carlos Estrada, Boston Children’s urologist-in-chief. Dr. Estrada, along with neurosurgeon Dr. Benjamin Warf, “are two ... Read More about Lifechanging surgery brings Ann-Raleigh relief from VUR — and some new ‘besties’
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
‘A picture-perfect life’: Makayla is thriving with OEIS syndrome
On a sunny day this spring, Makayla Brisson was on a mission: to find the two bunny rabbit sculptures in the rooftop garden of Boston Children’s Hale Family Building. As much fun as she was having, Makayla was distracted: She was anxiously waiting for her best friend, Aubree. And as Aubree and her parents entered ... Read More about ‘A picture-perfect life’: Makayla is thriving with OEIS syndrome
Playing the long game: An exciting discovery in telomere disease
Each time our cells divide, the protective caps that keep our chromosomes from fraying, called telomeres, lose a bit of their DNA. Telomeres shorten steadily as we age, but in certain medical conditions like dyskeratosis congenita, the process is accelerated. “Your telomeres determine your lifeline; how long they are determines how old your body is,” ... Read More about Playing the long game: An exciting discovery in telomere disease
Lacrosse, cerebral palsy, and leadership: Luke’s story
When he returned to lacrosse after surgery on his left leg, Luke Kilfoyle wasn’t nervous. In the five and a half months since his surgery, he’d worn a cast, gone to school in a wheelchair, used a walker, then a cane and ankle-foot orthosis (AFO). He’d spent hours in physical therapy and the gym. By ... Read More about Lacrosse, cerebral palsy, and leadership: Luke’s story
No backing down: Sophia takes on a rare form of liver cancer
Sophia LaBorde is headstrong and “doesn’t back down,” says her mother, Alicia. So last year when Sophia had some gastrointestinal discomfort and a low appetite, she asked her parents to bring her to her local pediatrician. And when test after test ruled out more common culprits — lactose intolerance, heartburn, even thyroid disease — she ... Read More about No backing down: Sophia takes on a rare form of liver cancer
A ‘super’ new heart surgery for a super kid
When you’re the first person in the world to undergo a new type of heart surgery, you don’t have to use the procedure’s clinical name. You can give it any name you want, even your own. That’s what 7-year-old Easton Schlein’s family has done. While his Boston Children’s cardiac surgery team calls the groundbreaking procedure a “reverse ... Read More about A ‘super’ new heart surgery for a super kid