A Mother's Persistence Spurs Hope

McAdoo child's death focuses state attention on a genetic disorder.
by Rory Schuler 
12/14/00

McAdoo-An adorable child with a smile as big as her tiny lips would allow, Rhiana Gallagher loved balloons.

Her parents, Kimberly and Daniel Gallagher, McAdoo, were thrilled with their bundle of joy.

But as Kim watched her daughter's development closely after her birth on Nov. 30, 1998, she noticed Rhiana's motor skills were behind.

Subsequently diagnosed with Spinal Muscular Atrophy (SMA), the number 1 genetic killer of infants, Rhiana died a year and four days after her birth.

Her mother, consumed by the tragedy, summoned the courage to make a stand to increase awareness of SMA and advance the effort to find a cure.

Her efforts bore fruit this week.

On Wednesday, State Rep. David G. Argall, R-124, presented Kimberly Gallagher with Pennsylvania House Resolution 557 at his Tamaqua office.

The argall-sponsored resolution officially recognizes the week of Nov. 26-Dec. 2, encompassing Rhiana Gallagher's birthday, as "Spinal Muscular Atrophy Week" throughout the state.

It calls attention to SMA in remembrance of Rhiana's courage and spirit.

As it later became known to the Gallaghrs, an attraction to balloons is common for babies with SMA.  Their large round shapes and lighter-than-air weight give the illusion of strength for weakened arms.

One in 40 carry the SMA gene, according to statistics made available through Rhiana's mother.  Both parents must possess the gene for the child to be affected.  It's rare, but deadly, with no age or ethnic preference.

No one else in the Gallagher family had ever been diagnosed with SMA-which is the case with most SMA victims.

Kim Gallagher has helped to inform others of the ailment by speaking out about her daughter's struggle.

More research is needed in order to combat the affliction, she said.

"Researchers have come close to simulating a substance similar to a protein, which the SMA gene prevents the body from manufacturing on its own," Gallagher said.  "The cure depends on this research."

But more funds are needed before the proposed medical breakthroughs can be tested on human beings.

A grass-roots organization called Families of SMA is at work fundraising to find a cure.  It can be reached at PO Box 198, Libertyville, IL 60048, or at its website www.curesma.com. 

Another website remembers Rhiana.  It can be found at www.our-sma-angels.com.

In her effort to educate people about SMA, Gallagher related the difficulty the family experienced after the diagnosis was made.

One time, while suckling a bottle of milk, Rhiana turned white, and the milk started to run out of here nose as she encountered the first of what would be many respiratory arrests.

"We called paramedics, but I think we resuscitated her ourselves", she said.  "When she was admitted to the hospital, we found out she could no longer be fed through her mouth."

SMA, she said, weakens the muscles, including those in the throat.  Eventually, doctors had to insert a feeding tube.