Going ‘all in’ for Khori: New hope for congenital enteropathy
Khori LeBlanc is “one of the sassiest and sweetest kids you’ll ever meet,” says her mom, Bryanna Black. Her good mood even carries over to her many hospital visits, where she can be often be found practicing her “karate” moves on the way to an appointment. It’s a resilient attitude that has served her well ... Read More about Going ‘all in’ for Khori: New hope for congenital enteropathy
PK deficiency clinical trial: Jim’s volleyball ace
Growing up with pyruvate kinase deficiency (PK deficiency) wasn’t always the easiest thing, but it was my reality. My visits to Dana-Farber/Boston Children’s Cancer and Blood Disorders Center helped give me perspective — although my condition was difficult to deal with, it certainly was not the worst condition I could have. It made me grateful ... Read More about PK deficiency clinical trial: Jim’s volleyball ace
Clubfoot bracing for an active boy: Finn’s story
When Finn Beaulieu learned how to say elephant, he ran around the house repeating the word at least 20 times. When asked to rate his activity level, his mother Carolyn says, “He’s 2½, I would say his activity level is high.” Finn’s joy of movement can make it challenging for his parents to put him ... Read More about Clubfoot bracing for an active boy: Finn’s story
Dancer stays on toes during kidney cancer treatment
Carly Tobin loves dancing for the fun and freedom it provides. During treatment for a rare pediatric kidney cancer known as Wilms tumor, the pre-teen’s passion also proved a vital source of strength. Diagnosed in early June 2019, Carly — now 11 and cancer-free — underwent surgery, radiation, and chemotherapy at Dana-Farber/Boston Children’s Cancer and Blood ... Read More about Dancer stays on toes during kidney cancer treatment
Life-changing second opinion for laryngeal cleft helps Tyler thrive
When Brittany Browne was in school to become a speech language pathologist, she briefly learned about a type of congenital defect called a laryngeal cleft. “We were told it’s so rare that we’d probably never encounter one in practice and didn’t really need to know about it,” she recalls. Yet years later, as her young ... Read More about Life-changing second opinion for laryngeal cleft helps Tyler thrive
Carolann’s story: When it’s more than a concussion
Cheerleading had always been a big part of Carolann Hurley’s life. So when she was dropped by accident as a sophomore in high school and diagnosed with a concussion, she had no intention of stopping. It wasn’t her first concussion. But this time was different — she kept blacking out and was having frequent migraines ... Read More about Carolann’s story: When it’s more than a concussion
No longer just ‘getting through the day’: Addressing Lucie’s chronic pain
Lucie Robert had always been an engaged and active kid: At just 10 years old, she loved Nordic skiing, dancing, and playing the cello. Yet she was also prone to injury, sometimes on crutches because of minor twists and sprains. Even after a series of minor dislocations led to a diagnosis of Ehlers-Danlos syndrome (EDS) ... Read More about No longer just ‘getting through the day’: Addressing Lucie’s chronic pain
Heart strong: Two families bond over shared challenges
Four years ago, Ali Marcus walked through the door of a coffee shop in Connecticut and met the woman who would soon become her close friend, Britt Sheiber. The two were meeting at the suggestion of a mutual friend: Britt had just learned at a prenatal visit that one of her twins would be born ... Read More about Heart strong: Two families bond over shared challenges
One in 5 million: Nathan’s rare diagnosis and happy recovery
Nathan Asselin was a happy baby with no apparent health problems when he became ill just before his birthday in April of this year. “He didn’t seem himself the night before, then he woke up with a fever on the day of his birthday,” says his mother, Danielle. “He sat on the floor eating his ... Read More about One in 5 million: Nathan’s rare diagnosis and happy recovery
Unraveling the mystery of Rylan’s respiratory problems
Rylan is Destinee Davidson’s second child, but in some ways, he feels like her first. “Our older son, Bryce, has always been healthy,” she explains. “With Rylan, I feel like a first-time mom because everything is so new.” Rylan has been keeping Destinee and her husband, Bradford, on their toes since the day he was ... Read More about Unraveling the mystery of Rylan’s respiratory problems