Dalton was born on December 2, 1997, at 36 weeks. He was only 3 lbs 8 ozs because I had pre-eclampsia. He did well and seemed to be a normal child, just small. When he was 2 1/2 he got pneumonia and the doctor noticed on the x-ray that his heart looked abnormal, he had cardiomyopathy. We had no family history so the doctors thought he had contracted it virally. It was a tough diagnosis to deal with, but as far as we knew he would still maintain a relatively normal life. When he was 4, Make-A-Wish sent him to Disney World. He had a wonderful time and we were so touched by all the caring people.

As time went on I began to notice he was starting to fall a lot more than normal, and asked the pediatrician I worked for to look into it. Dalton was sent to Duke Genetics in Raleigh, NC. Through genetic testing, we got the results that Dalton had a rare genetic disease called Friedreich's Ataxia and that my husband and I must both be carriers. We were shocked and devastated at this news. We were told FA is a rare, genetic, neurodegenerative, multi-system, life-shortening disorder. The symptoms include:

• muscle weakness and loss of coordination, leading to wheelchair confinement,
• vision problems, hearing loss, and slurred speech,
• scoliosis,
• diabetes, and
• heart disease.

It was so hard to absorb this all, and also to worry about our daughter, and the child I was carrying, since my husband and I were carriers. We had them tested and thankfully they are both only carriers, and we can focus on Dalton. In February of 2005 Dalton was honored by the Marines at Cherry Point, NC and made an honorary Marine for the day. It was awesome, he had so many stories to tell everyone. They let him train in every different field on the base, and gave him his own flight suit, helmets, and fatigues. I cried the whole day, he was made to feel so special.

One week after this event, Dalton got hospitalized, this time for something new, he now had diabetes. I thought, how much more can this poor child endure. He did pretty well adjusting, but it took a big toll on his body, making him use a walker for the most part of his days. He had a hard time adjusting at school. Then in April, 2005 he was rushed to the ER because he was screaming in pain that his whole body was hurting and he was clenched into a ball. He was then shipped to Pitt Memorial via ambulance and stayed one week, only to determine that it was normal progression for this disease and had caused his body to spasm and not release. It took physical therapy and water therapy to get him released. When he returned home he crawled everywhere because he was too weak and unsteady to walk. It was heart breaking to see my now 7 yr old deteriorate so fast compared to the statistics.

He received his wheelchair just this week to use for long distances and still uses his walker most of the time. He attended the Victory Junction Gang Camp in August and got to meet NASCAR driver Kyle Petty. He stayed with other other children with similar diseases and got to learn that he is not alone in the world. His spirits have been brighter since then and we are looking forward to a better rest of this year.

— Daltons mom, Stephanie