Jack Scribner is like any two-year-old boy. He loves being outside, being around people, laughing, and causing mischief. The major difference between Jack and other boys his age is that Jack is much tougher. That’s not to say most two-year-old boys aren’t tough, but most two-year old boys aren’t Jack.
The youngster, from Woburn, was born with leukodystrophy, which is a rare, progressive, metabolic, genetic disease that affects the brain, spinal cord and often the peripheral nerves. Each type of leukodystrophy is caused by a specific abnormality that leads to abnormal development or destruction of the white matter (myelin sheath) of the brain.
Jack was diagnosed at 18 months old, his mother, Melissa Scribner, said. She added that until then most people assumed he was healthy. He spent much of the early part of his life in the hospital as doctor’s attempted to diagnose him.
Jack lives with his Mom Melissa, Dad Jarrod, and two older sisters.
It was all those hours in the hospital where his family found out about the Eversource Walk for Boston Children’s Hospital. The walk has existed for 16 years, but this was the first year for the Scribner family.
Melissa wrote about participating:
“I'm fundraising on behalf of Boston Children's Hospital because I BELIEVE that by investing in the best doctors and scientists we can save lives - today! I also BELIEVE that donations received before today have helped a child we love.
“Our son, Jack was born a healthy baby with an uncomplicated pregnancy on Oct. 14, 2015. His first three months at home with his dad, his two big sisters and me were beautiful. A seemingly healthy baby born into a healthy family.
“It was at three and a half months of age that Jack was evaluated in the ER of Boston Childrens Hospital because he had developed nystagmus (a fluttering of his eyes) and a noticeable decrease in muscle tone for his age.
“After an extensive work up, Jack was diagnosed at 18 months of age with a rare disorder called Pelizaeus-Merzbacher disease (PMD). The disease is one of a group of genetic disorders called Leukodystrophy. Because of abnormalities affecting the white matter in the brain and spinal cord, PMD affects the central nervous system to variable degrees giving a wide variety of symptoms. It is a degeneratively progressive disease that leaves only room for treatment of symptoms.
“Jack is strong and has been through more than most adults we know, but it is with the exceptional care at Boston Children’s Hospital and the groundbreaking research being done that will help him become even stronger.”
The family set a modest goal of raising $1,000. They proceeded to blow past that goal in one hour thanks to social media getting the word out about Jack’s condition (though most of the donations came from family and friends). All told, the family raised in excess of $20,000, which currently puts them in fourth place amongst the other families who have raised money. Not too shabby for their first time fundraising.
“We were overwhelmed,” Melissa said about the amount of money the family raised. “We only started back in February.”
The walk took place earlier this month and Melissa said the family had 55 walkers, with 15 of those being kids under the age of seven. Even Jack participated, in his own way, as his mother carried him the entire six miles. Clearly, Jack isn’t the only strong one in the family.
If there’s a silver lining for the Scribners it’s that Melissa, before leaving to become a stay-at-home mom, was a nurse with Winchester Hospital. She has years of experience taking care of those who are sick and/or injured.
Jack’s situation is a tad more serious than your garden variety sprained ankle, of course. He requires round-the-clock care. His condition must have come as a shock to the parents, as not only are the Scribner’s other two children perfectly healthy, but Melissa had a normal, healthy pregnancy when carrying Jack.
“At three months, he had low muscle tone and couldn’t lift his head up,” his mother noted about first discovering there may be something wrong with Jack, “then his eyes began fluttering.”
That was enough to get an on-call neurologist to follow the case. After neurology, his parents went to ophthalmology. In all, the parents reached out to four doctors before finding someone who could diagnose the young boy. Sadly, many other children with leukodystrophy aren’t as fortunate as Jack to receive a diagnosis at a young enough age to begin treatment. There’s no cure, per se, but the earlier it’s diagnosed, the earlier the patient can begin various therapies.
Melissa noted that it’s a “life limiting and progressively deteriorating disease.”
There is a Leukodystrophy Center in Philadelphia, but the family chose to remain local. She said that Jack has been well taken care of at Boston Children’s Hospital.
When Jack gets a bit older, the parents will send him off to school like any young child. Melissa said they hope to enroll him at the Shamrock School in the South End of Woburn. This week they’ll hold a final meeting with school officials. Although nothing is set in stone, Melissa appeared confident the school would accept Jack.
“We’re quite impressed with the school,” the mom said, “and we’d be happy if he went there.”
The parents are no strangers to the Woburn school system, as both went to Woburn Memorial High School where they met and fell in love.
Melissa said the Shamrock has a pretty integrated program with children who have needs similar to Jack’s. She also noted that one of the teachers has experience with Jack’s disease.
Today, Jack gets to spend time at home with his family - his mother, father and two older sisters, five and six years old.
“Jack’s mostly avoided in-patient treatment,” his mother said, adding that while her son is “pretty healthy,” all things considered, he’s 100 percent g-tube fed. (He did contract the flu virus in the winter, Melissa noted, but that didn’t really slow him down much.)
Jack receives five hours of therapy a week including occupational therapy, speech therapy, physical therapy, and vision therapy. But when he’s not in therapy, you can find him on the couch watching Sesame Street or playing with his sisters.
Melissa mentioned that while the two older Scribner girls are “going through different emotions,” they are getting old enough to understand and still love Jack just the same.
While he can’t walk or sit up on his own, Jack is able to roll from side to side and back to stomach. He has a special stroller and standing equipment, but like all two-year olds, he’s dependent on his mother. In Jack’s case, his mother just happens to be a nurse (not all two-year old boys are so lucky).
Even with his disease and all of his equipment, Jack is never excluded. Even though she had to carry him, Jack participated in the walk.
“I’m always active with him,” his mother acknowledged. “He’s always included, never excluded.”
One of the activities Jack participates in is music therapy. Melissa said he goes to music group at the Parkinson School for the Blind in Watertown every Thursday. It’s at these events where Melissa can meet other mother’s who have children with similar issues to Jack.
It can only be a positive to know that on days when you’re struggling - the tougher days - there are plenty of other mothers going through similar problems.
For Jack, one small problem concerns his weight. His mother said he’s recently gained some weight, adding that doctors don’t want to see him get much bigger. Otherwise, Jack is living his life as any two-year old boy would. The family is also doing their best to support him.
While they participated in this year’s Eversource Walk, Melissa wasn’t 100 percent sure they would do it again next year. She doubted the family could ever raise the kind of money they raised this year. Instead, they’re more likely to focus on local, community-based events like a Family Day event in September at Leland Park. She said they hope to make it a yearly event.
“We can take the money from an event like this and put it into special education programs in Woburn,” Melissa said, adding they might also hold bake sales at their other kids’ schools.
This will all hopefully help Jack as well as other children like him. Also helping Jack will be getting out of the house and attending school with his peers.
“I think he’ll make more progress outside of the home,” his mother admitted.
Whatever progress he makes might look minuscule compared to the progress most young boys make, but any progress for someone like Jack is a big deal.
“Jack will move different mountains than you or I move,” Melissa admitted.