By Denise Allabaugh
Little Skylar Saranchuk actually is a medical miracle.
Skylar is living with Spinal Muscular Atrophy, the number one genetic killer of children under two years old.
Eighty percent of children who have this genetic disease die before the age of one.
Skylar, however, has beaten the odds and lived a year past her first birthday. She will celebrate her second birthday on Monday.
"We can't be more proud of her," added Skylar's dad, Dave Saranchuk. "I give her all the credit in the world."
Spinal Muscular Atrophy is a muscular disease of the anterior horn cells of the spinal cord.
Skylar is not able to hold up her head or crawl, as the disorder affects the voluntary muscles for activities such as crawling, walking, head and neck control, and swallowing.
Skylar's dad noted that he has seen other children the same age as his daughter who are twice her size.
The disease, which causes weakness, is passed on genetically to children by their parents. One of every 6,000 children born is affected. It is the second most common neurolmuscular disorder of childhool.
Skylar's parents, who live in Thornhurst, are both carriers of the recessive SMA gene.
"You don't know you have this gene, until you have a child. We didn't know until she was born," Tracy said.
Tracy noted that there is only a 25 percent chance in each pregnancy of the child having SMA, and a 75 percent chance in each pregnancy that the child will be healthy.
"One out of 40 people is a carrier of this recessive gene," Tracy said. "The brain is not affected, and they have been tested to have at least average to above average intelligence."
Caring for Skylar is a full-time job. Skylar and her parents travel to Danville for her medical appointments. They also have nurses come to their home to assist with her medical care.
"When she sleeps, she has a hard time breathing," Tracy said. "I have to do constant suctioning to clean her out. She is on an amino acid diet."
Researchers throughout the world are working to find a treatment and cure for Spinal Muscular Atrophy.
If anyone would like to donate to help Skylar, she has a fund at Wyoming Area Federal Credit Union, 800 Wyoming Ave., Wyoming, or e-mail firstname.lastname@example.org for more information.
"We can't be more proud of her and her will to fight and survive"