Couple hoping to spread the
word about deadly childhood disease.
by Jill C. Whalen
Rhiana Gallagher was a joy to her parents, Kim and Dan Gallagher.
The McAdoo couple couldn't believe how little the infant cried or how often she wore a smile on her face.
In her parents' eyes, she was the perfect baby.
When Rhiana turned six months old, however, Kim began to believe that there was something wrong.
"She wasn't able to roll over," she explained. "She wasn't reaching developmental milestones."
The worried parents took the baby to oa neurologist for tests, and a few weeks later they heard something no parents should have to hear-their child had less than a year to live.
Rhiana was diagnosed with Spinal Muscular Atrophy (SMA), a disease which destroys spinal cord nerves that control voluntary muscle movement and eventually leads to death.
Like half of the 6,000 babies born annually with SMA, Rhiana died before she reached her second birthday.
"She was one year and four days when she died," Kim explained. "Nov. 30 would have been her second birthday."
According to Kim, many do not realize the severity of this genetic disease although it is the first largest killer of children less than two years old.
That's why she sent a letter to Rep. David G. Argall to ask for his help in getting information to the public. In doing so, she hoped funds for research to find treatment and a cure for SMA would be obtained.
"I just sent him a letter", Kim explained, "and he automatically helped."
Argall's help came in the form of a resolution he sponsored which recognizes Nov. 26 to Dec. 2, Rhiana's birthday week, as "Spinal Muscular Atrophy Week" in Pennsylvania.
A copy of the House of Representatives resolution was presented to Kim Wednesday morning by Argall.
"I am so overwhelmed," Kim tearfully told Argall. "I thank you so much for your generosity."
Argall, a father of two, said he could not imagine losing one of his children.
"I admire your willingness to go forward," Argall said.
With the resolution, Kim hopes the word will be spread about SMA, since one in 40 people carry the gene which causes the disease. The child of two carriers has a one in four chance of developing SMA.
"There are many parents in the area and in the world who have children who are affected by this disease," she said. "When children are diagnosed, parents don't know where to turn."
There is no cure for SMA, but researchers are trying to find its causes in hopes of preventing-or even reversing-its impact. Indiana University Research, funded by Families of Spinal Muscular Atrophy, has found one of the key families in the gene location, which will help foster additional research.
Although Rhiana spent much time in hospitals and in doctors' offices, Kim and Dan made sure her last days were happy.
"We used to take her everywhere with us," Kim said. "To the park, to the seashore..."
She even won a first place prize in the McAdoo Halloween parade last year. Dressed as a Penn State Nittany Lions cheerleader, Dan pulled her on a tiny football stadium float.
The Gallagher's memories of their daughter are posted on a website, www.our-sma-angels.com. The site also features additional information about the disease.