When Lucas St. Onge blew out the five candles on his birthday cake, he made just one wish. He didn’t ask for ninja turtles, a T-ball set or an Xbox — the only thing he wished was to be just like any other kid.
“It was a gift I couldn’t give,” says his mom, Heather.
On that same day, last May, he got his wish.
“He got a liver, stomach, pancreas, intestine and spleen — the five organs he needed to help him become healthy and happy,” Heather says.
Heather was 18 weeks pregnant when she and her husband, Anthony, learned they were about to face a myriad of medical challenges with their unborn child. To what extent remained unclear, until the day Lucas was born. …
When Tim Conners collected his wish from the Make-A-Wish Foundation in 2012 at the age of 18, he was blind from childhood leukemia that had spread to his optic nerve and craving inspiration to transcend his disability. A football player and wrestler who’d never been an outdoorsman, he asked to meet Erik Weihenmayer, the first blind person to climb the Seven Summits, the highest mountains on seven continents.
Tim’s wish came true. He had 2½ terrifying but transformative days of outdoor adventures in Colorado with Erik, who lost his sight to a degenerative eye disorder at 13.
Now Tim is training to climb Mount Kilimanjaro, the 19,000-foot peak in Tanzania in May, shortly after he graduates from Ithaca College. He’s already climbed four peaks in Colorado, including the 14,000-foot, snow- and loose-rock-covered Mount Sherman last summer. He’s trekked and rafted in the Grand Canyon.
“In a lot of ways, losing my sight gave me my vision,” says Tim. …
Happy to have given birth in January 2015 to two seemingly healthy boys, Levi and Colton, after an uneventful pregnancy, Kala Looks gave little thought to the routine heel prick of newborn screening. At 23 and 24, she and her husband, Phillip, were high school sweethearts starting a family.
Two weeks later, a Michigan state health official called. Something came up on Levi’s screen. You need to bring him in right away. Three weeks and numerous blood draws later, the Looks had a diagnosis: Severe combined immune deficiency (SCID) — “bubble boy” disease. Levi’s blood had only a few T cells, crucial ingredients of the immune system, and those were likely his mother’s lingering cells. Soon he would have no immune system at all.
That the fraternal twins are now healthy, active toddlers, climbing onto the dining room table and leafing through picture books and starting to talk, is thanks to newborn screening and a pioneering gene therapy trial at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center.
Had Levi been born before October 2011, when Michigan began screening all newborns for “bubble boy” disease, he could well have died of overwhelming infection before his first birthday.
Instead, Levi has a functioning immune system after being treated in Boston as part of an international clinical trial of gene therapy for boys born with X-linked SCID. He is one of three boys treated on the trial’s U.S. arm whose disease was picked up by universal newborn screening, now standard in 42 states. Of the other four boys treated at U.S. sites, one from South America was diagnosed at birth, because an older brother had died of the disease. Three boys, from South America or states that didn’t yet have newborn screening, were diagnosed after suffering life-threatening infections that their bodies had trouble shaking. …
Before he was diagnosed with neuroblastoma in 2014 at the age of 11, Noah Smith was a veteran of the children’s theater stage. The suburban Boston boy had been cast in ensembles. He’d played Kurt Von Trapp in “The Sound of Music.”
Little did Noah know that he would soon star in a video designed to allay the fears of children facing radioactive medication delivered intravenously in a lead-lined room where they’d live, under restrictions, for a week. After he received the medication, his parents would only be able to visit him one at a time, standing behind a lead shield and unable to touch him. Nurses would limit their time in his room, entering briefly to check vital signs. Parents and nurses alike would wear badges to monitor their exposure to the radioactive child in the bed.
Add to this the fact that most children who get the cancer that originates in nerve cells are under 5 and it’s easy to understand the anxiety these young patients and their families might feel anticipating MIBG (metaiodobenzylguanidine) therapy. …