Benefit for local girl July 24 in Baldwin
Gabbie Bark was given just six months to live.
Thankfully that first diagnosis proved wrong, due to a general misunderstanding about Spinal Muscular Atrophy (SMA). The 2-year-old's future is much brighter than first suspected.
That doesn't mean her current health status and her future won't be filled with challenges.
An inherited disease, SMA leads to the loss of muscle and motor function. The rare disease is the result of the absence of or defect in the individual's Survival Motor Neuron 1 gene.
"One in 40 people are carriers," explained Gabbie's dad, Jamie. "Both me and my wife (Jackie) are carriers, so from a numbers standpoint it's pretty rare to have both parents as carriers."
Not every child born to such a couple has the SMN1 defect, as evidenced by the Bark's 6-year-old daughter, Maddie.
But the Barks realized something was different about Gabbie as she turned 1 year old.
"I was comparing her to her older sister," he said. "Maddie walked at 9 months. Gabbie was crawling, but she was weak and had low muscle tone."
Doctors said Gabbie was just a bit delayed in her development and the family shouldn't worry about it.
But things seemed to get worse over the next few months, and Jamie decided to take a video of his daughter's labored crawling to show to a specialist. The Barks went to Gillette Children's Hospital in St. Paul, Minn. and Gabbie went through several months' worth of tests.
That's when they first heard about SMA.
"It's the No. 1 genetic killer of kids under 2 years old and no one has ever heard about it," Jamie said.
At the initial diagnosis, a doctor told the family that Gabbie had just six months to live.
"For me, I would go to work and just cry," said Jamie, who owns Glass Doctor in Hudson. "I thought we had just 6 months with her, but the doctor was under informed."
It turned out that the local girl didn't have the most advanced form of the disease (Type I) but instead had the intermediate form of the disorder (Type II). Patients with Type II typically live into adulthood, even though they will likely never walk and may have trouble living independently.
"Cognitively, she's way ahead of the curve developmentally," Jamie said. "She's a little chatterbox. She's a happy little girl most of the time -- she is 2 after all."
Typical SMA patients continue to lose muscle function, even developing difficulty with breathing and swallowing. Jamie said often SMA sufferers catch pneumonia and other complications as a result of their inability to breathe well.
Gabbie is a strong swallower and breathes well, Jamie reports, and she's never had to go to the hospital for any SMA-related treatment.
The family is also bouyed by current animal trials of a new drug to treat SMA, which could hit the market before long.
"It's one of the biggest breakthroughs in muscular dystrophy research in 30 years," he said. "What an amazing time to be alive."
Until such a treatment is proven and approved, however, the Barks continue to prepare for a future filled with wheelchairs, handicapped accessibility concerns and medical bills.
"You just take it one day at a time," Jamie said. "If you stop and look at the big picture, you'll go crazy."
Jackie, who expected to eventually return to work, will now stay home to be Gabbie's full-time caretaker. Not only are the Barks losing an income, their insurance premiums have gone through the roof (a 15 percent hike last year and a 20 percent increase this year.)
Gabbie currently has a wheelchair on loan from the Shriners organization, and she'll eventually get a wheelchair of her own to motor around in.
The family is also hoping to buy a $5,000 mechanical lift so that Gabbie's wheelchair will be able to access the Bark's split-level home and a wheelchair accessible van to help transport Gabbie and the rest of the family.
To help the family accomplish those goal, and to help cover some of the mounting medical expenses, a fundraiser is being planned from 11:30 a.m. to 7 p.m. on Sunday, July 24, at the Baldwin American Legion. Numerous volunteers and local businesses are helping to organize the gathering.
The event includes a silent auction, bake sale, dinner (Walking Tacos, barbecues and hot dogs) and live music (Nanopico & the Coat Tales).
Among the silent auction items are Minnesota Twins, Minnesota Wild and Green Bay Packers souvenirs, art pieces, certificates for local restaurants and more.
"The kindness of strangers just blows us away on a daily basis," Jamie said. "We've gotten some pretty neat things. It's been pretty cool."
Also, Thrivent Financial will match 25 cents on each dollar donated, up to $5,000, for Gabbie's care.
"So if someone wants to donate now, their money is worth a little bit more," Jamie said.
Visit Gabbie's website at www.gabbiebark.org