Cerebral adrenoleukodystrophy: How the Cooksons dodged a devastating disease
Heather Cookson believes that if she hadn’t insisted her son Ricky get a brain MRI to investigate his frequent headaches, neither he nor his younger brother Jerry would be walking or living full lives today. “I just wanted peace of mind,” she says. “Ricky got the MRI, and that’s when the lesion was found.” The ... Read More about Cerebral adrenoleukodystrophy: How the Cooksons dodged a devastating disease
Catching up with Lucas eight years after his multivisceral transplant
Lucas and his mom, Heather, aren’t shy talking about his health journey and his multivisceral transplant. “If other families can learn something from Lucas’ story, it would be to keep advocating for your child and to trust that gut feeling,” Heather says. “Without organ donors, Lucas would not be here today.” Lucas was born with ... Read More about Catching up with Lucas eight years after his multivisceral transplant
‘A lot better now’: Andrew’s recovery from Rocky Mountain spotted fever and a stroke
When Andrew was bitten by a tick in 2021, he and his parents could hardly have imagined that just a month later, he would be coping with a series of health problems that would culminate in a stroke. Andrew, then 7, didn’t even realize he’d been bitten until he began to feel sick with a ... Read More about ‘A lot better now’: Andrew’s recovery from Rocky Mountain spotted fever and a stroke
Born with congenital scoliosis, Thelma looks to the future
Sixteen-year-old Thelma Alemnji probably enjoys student life more than most high school juniors. After all, up until last year, activities like drama club, debate club, and student government were out of reach. Born with severe congenital scoliosis and thoracic insufficiency syndrome, Thelma’s childhood and early adolescence were marked by regular hospital visits and frequent surgeries: ... Read More about Born with congenital scoliosis, Thelma looks to the future
‘We’re going to Boston’: Why Aydan’s family temporarily relocated for craniopharyngioma care
One evening in October 2022, 2-year-old Aydan Arguello arrived at Boston Children’s Hospital. It wasn’t a routine visit, but instead the final stop in an urgent journey from his home in South Florida. Months earlier, the toddler had been diagnosed and treated for a large brain tumor — but it was a related concern that led ... Read More about ‘We’re going to Boston’: Why Aydan’s family temporarily relocated for craniopharyngioma care
After a severe case of myelitis, ‘rockstar’ Maxwell is on the move
When Maxwell Lazarz’s mother, Jennifer, tells him he’s a rockstar, he just laughs and asks her what that means. But as this joyful almost-3-year-old zips around in his motorized wheelchair, cracking jokes and blowing bubbles, it’s clear that his mom is right. In fact, Maxwell has been defying expectations ever since he was diagnosed with ... Read More about After a severe case of myelitis, ‘rockstar’ Maxwell is on the move
Making a change: After a second opinion for spina bifida care, Sydney is thriving
At almost 10 years old, Sydney MacKay is sassy, spunky, and wants to be as independent as possible. Because she was born with spina bifida, part of that desire for independence means being more involved in her own care. Although Sydney underwent a surgical procedure a few years ago aimed at helping foster that independence, ... Read More about Making a change: After a second opinion for spina bifida care, Sydney is thriving
Full-family support sees Hannah and her parents through AVM surgery
Nine-year-old Hannah from Vermont is passionate about skiing; not much keeps her off the slopes. In fact, not much slows her down or dampens her energy, period. So, when she experienced a ruptured arteriovenous malformation (AVM) last spring, she wasn’t sidelined long. Her parents, Katie and Rich, credit Hannah’s remarkable recovery to her vivacious spirit ... Read More about Full-family support sees Hannah and her parents through AVM surgery
All in it for Hudson: A family’s shared path with cavernous malformations
Three-year-old Hudson loves trucks and PAW Patrol. He’s a delightful blend of sweet, fun, and feisty, and — after a seizure on New Year’s Day led to an extended stay at Boston Children’s Hospital — he’s an inspiration to his parents, Gabrielle and Matthew. To Matthew specifically, Hudson provides a new look at his own ... Read More about All in it for Hudson: A family’s shared path with cavernous malformations
Lily’s smile lights up the stage, thanks to orthodontic care
Thirteen-year-old Lily is a fan of the theatre — and she’s no stranger to taking the stage, having already performed in two plays just this past school year. “She’s always the most confident when she’s up on stage with her friends,” says her mom, Jade. Lily’s confidence is something that she recently stepped back into, ... Read More about Lily’s smile lights up the stage, thanks to orthodontic care