Real Stories

Reaching for the Sky



August 2010 - Since Skylar Marie Jones of Atlanta, GA was diagnosed with SMA Type I, her parents, Kyle and Ashley Jones have reached out to every available resource to help them fight for their baby while looking up to God for direction and guidance. Skylar's journey with SMA began at her one month check up. At that point, she had low muscle tone, was low for her weight percentile and was showing other symptoms. Ashley pointed out to their pediatrician that Skylar's right arm looked like a chicken wing-it was always bent at the elbow and wrist.

Their doctor sent them to a brachial plexus specialist to see if the shoulder injury was a result of a birth injury. The physician noticed that all of Skylar's limbs were affected because he could not get a reflex out of her knees. Ashley and Kyle were alarmed by this surprising news. As they carried Skylar out of the room, Ashley noticed the doctor watching them from down the hall. She said, "I got this overwhelming feeling of pity, as if he knew something horrible and felt so sorry for me. It was extremely unsettling"

Their pediatrician called their cell phones within an hour after leaving the doctor's office and told them a neurological condition was suspected and that Spinal Muscular Atrophy was at the top of the list. After a quick search online about SMA, the Jones began to hope and pray their baby girl did not have the crippling condition. They were immediately sent to a neurologist where their worst fears were confirmed. The specialist told he was almost certain Skylar had SMA, but a genetic blood test would confirm his preliminary diagnosis. It would take three to four weeks for the blood test to come back. In the meantime, Ashley and Kyle made an appointment with a pulmonologist to establish a baseline for Skylar's lungs since SMA affects all voluntary muscles, including breathing and swallowing muscles. Four weeks later, they got the call. Skylar had SMA Type 1. Ashley describes feeling like her heart was torn out, shred to a million pieces and then put back together just enough to keep beating. Ashley adds, "My heart still aches every day."

Despite the pain, Ashley and Kyle hope and pray for a miracle everyday and try to focus on the bright side. Skylar is alert and smart. She loves animated films like Cars, Ice Age and Finding Nemo. They can't help but notice their sweet baby girl brings joy to those who meet her and feel blessed that God chose them to raise her. "Skylar hardly cries anymore… she just lays there in her crib, content with looking around until I come and play with her or rock her on my lap," said Ashley.

The young mom admits there are times she longs for her baby to wrap her little arms around her neck, for her to say the word "mommy" and hear her sweet little voice. She would love to play with Skylar in the pool, take her out to the park and let her run around with other kids. Instead, she spends her days administering daily breathing treatments and chest therapy, massaging Skylar to prevent her muscles from turning to scar tissue and putting splints on her at night to help her wrists, feet, and ankles. On bad days, many hours are spent keeping Skylar's oxygen levels up and moving secretions out of her lungs. They somehow manage to have time to play during the day on top of a rigorous feeding routine which requires a feeding tube. Skylar is hooked up to a pulse ox machine, which can restrict movement and activities, but they are all getting used to their care routine, "She puts up with everything that I am forced to do in order to keep her here, like deep suctioning, the torturous cough assist, whacking her back to knock the mucous loose and is such a trooper."

Now that the family has adjusted to life with SMA, they are dealing with the expense that comes with caring for a medically fragile child. They have been nominated for the Extreme Makeover Home Edition show. The Jones never thought they would be in a situation to qualify for the program. Ashley said, "But here we are, struggling with medical bills, a mortgage on a rotting house located on a beautiful property that we had dreams of building on, and lots of special needs to care for Skylar and offer her the best life possible."

They are also busy raising money through a fund set up through their church to help purchase a handicap accessible van. A new vehicle will help transport Skylar and all of her medical equipment - the cough assist, oxygen tank, suction machine, bi-pap, and other supplies that no longer fit in the family's two door blazer. While the Jones' have faced the many challenges SMA can bring, their faith remains strong and they continue to be amazed by the movement of God's hands and feet through this time. "We've gotten some stuff in the mail from people we haven't even met in addition to gifts from friends and it just means so much, words can not express."