We are the Gritters. Dad…Don Gritter, mom…Holly Gritter, and big brother Easton…3 years old. Little sister Lylah June was born August 15th, 2013. She was the daughter we had been praying for. She was born perfect, with a perfect apgar score of 10. Perfect family of four.
When Lylah was around 4 months old we started noticing a decrease in her muscle strength. Within weeks she could no longer hold up her head or put any weight on her legs. After a month of visiting specialists and tests we were told Lylah has Spinal Muscular Atrophy (SMA), the number one genetic killer in children under the age of two. Why had we never heard of this? We were told to call hospice, and love our daughter as much as possible for as long as we had her. Our lives turned upside down.
SMA affects approximately 1 in 6,000 births. It is a recessive genetic disorder that affects both infants and children. Infants with SMA suffer from severe muscle weakness and atrophy of voluntary skeletal muscles. Muscle weakness in SMA is due to the death of the nerve cells (called the motor neurons) that connect the brain to muscle. SMA is progressive. Infants with SMA become weaker and weaker over time, eventually losing the ability to walk, sit, stand, eat, swallow, and even breathe. The mind is not affected. One in 35 people, or nearly 8 million Americans, unknowingly carry the gene mutation responsible for SMA. Few have any known family history. There is no cure for SMA.
Today, Lylah is 16 months old. She is NOT in hospice and is a happy, bright, little spitfire. She has the strength of a four week old infant, but can talk, smile, eat on her own, and sing her ABC’s! She is a busy girl, and participates in physical therapy, occupational therapy, water therapy, speech therapy, and visits a chiropractor on a weekly basis. She is defying the odds. We are not giving up on her. We have high hopes for our girl! We pray every day for a cure. Never give up. #Lylahstrong.
You can follow Lylah’s story at www.facefook.com/Prayersforlylah.
~Submitted by Holly Gritter