|Posted on Mon, Jun. 02, 2003|
NEW WEEK She'll be 3 and counting
Parents cherish girl with serious degenerative muscular disease
WILKES-BARRE TWP. - There's a place on the wall for Skylar's next birthday picture.
It's right up there with the other portraits of the girl who was not expected to live past her first birthday.
Tomorrow, Skylar Saranchuk turns 3.
"She amazes me," said her mother, Tracy Murray. "She makes me proud."
Her daughter was born with spinal muscular atrophy, a genetic disease that weakens the muscle system in her tiny body. Skylar, almost 18 pounds and a little more than 3 feet tall, was diagnosed at 4 months with type 1 SMA. The earlier the diagnosis, the more severe the disease.
Children, from infants to adolescents, and adults can be diagnosed with the degenerative muscle disease. The diagnosis ranges from type 1, the most severe, to type 4 in adults. There is no cure, though there is research under way toward that end, said Murray.
Each day Skylar lives is a gift to Murray, 26, and her boyfriend Dave Saranchuk, the child's father. They take it day-to-day and hope the string of days link together into years for their daughter.
"The doctors gave you no hope at all," said Murray of the prognosis given of her child after the diagnosis. "They told us take her home and love her."
The love shows in the Cinderella blanket on the couch where Skylar lays, the rack full of cartoon videos and the ever-present Murray who kneels at her daughter's side.
That's not to say Skylar doesn't need medical treatment. Murray credits Dr. John Bach at the University of Medicine and Dentistry of New Jersey, in Newark, with keeping Skylar healthy and alive. She had an annual checkup at the Geisinger Medical Center in Danville on May 20 and impressed her treating doctor there.
Murray chronicles Skylar's progress and tells her life story on the Web site www.our-sma-angels.com/Skylar. She's also found a support network on the Internet for SMA. It's through her own research and contact with other parents with special-needs children that Murray can better understand Skylar's disease.
The list of things Skylar cannot do is long - she can't swallow on her own, walk or talk. She may never be able to, acknowledged Murray. She gets her nourishment through a feeding tube. At night the child sleeps with a ventilation support system to help her breathe by expanding her lungs.
Resting on the couch, her stomach rises and falls rapidly. "She's a belly breather," said Murray.
Occasionally the child's tiny fingers, her nails adorned with red polish, wiggle as she hears her mother's voice. Skylar's mind is sharp, unaffected by the disease, said Murray.
As part of her effort to educate the public about SMA, Murray stressed her daughter is not mentally challenged. She can make a few sounds, said Murray. She even has started holding her breath if she gets mad and responds to stimulation.
"She likes when you dance with her," said Murray. "She likes watching ice skating on television."
Reaching her third birthday will be a milestone for Skylar, said Murray. The child's first year was rough and the second year a little better. "The last year's been the best with her. The older she gets, the more easy it's getting."
Jerry Lynott, a Times Leader staff writer, may be reached at 829-7237.