Make A Child Smile

Brandon's Story
written by mom Lisa

When Brandon was born he was a happy and very lovely little boy. He was healthy at birth and was a wonderful baby. My husband and I were enjoying every minute of his life. He started walking after his 1st Birthday and he was kind of slow about talking but we didn't think anything was wrong. Our family doctor said everything was normal. Brandon started early with sinus problems and the doctor said he would outgrow them. I didn't think it was serious because he was normal and was a happy little boy all the time.

The fall of 1996 Brandon started playing soccer and we noticed that he was not on the same physical level as most of the children his age. We asked the doctor and she advised us to see a neurologist. We made a appointment where they performed a scat scan, MRI, and blood work. Brandon had severe sinus troubles so he had sinus surgery in November 1996. We went back to the neurologist to get the results and he said we need more blood work to verify the results.

In January 1997 we got the results, which was the worst day in our life, as he was diagnosed with Ataxia Telangiectasia (A-T). A-T is very rare degenerative genetic disorder which impairs the nervous and immune systems of approximately 400 to 500 children in the nation. A-T children have a progressive degeneration of a part of the brain, known as the cerebellum. This gradually leads to a general lack of muscle control, and eventually confines the patient to a wheelchair. Because of the worsening ataxia, A-T children lose their ability to write, and speech also becomes slowed and slurred. Even reading eventually becomes impossible as eye movements become difficult to control. A-T children are also radiation sensitive and have an increase risk of cancer and respiratory infections. A-T is presently incurable and unrelenting. If they are lucky enough not to develop cancer, most A-T children are dependent on wheelchairs by the age of ten, not because their muscles are too weak, but because they cannot control them. A-T patients usually die from respiratory failure or cancer by their teens or early twenties. A few A-T patients live into their thirties, but they are extremely rare.

Brandon is currently in the 8th grade at a public school and has an one-on-one aid with him at all times. Brandon is in a wheelchair during school and he loves attending school with his friends. Brandon had his aid, Ms. Kristy has a busy day during school. His favorite class is Life Skills because they get to cook and sew.

Brandon is still going to St. Louis Children’s Hospital every 21 days for his IVIG infusions. He has been in good health but in December 2006, he had surgery on left foot to try to straighten it. It was getting difficult to transport him in and out of his wheelchair. He did well with the surgery and we had to travel to St. Louis every two weeks to get a case change. They had a pin in the bottom of his heel and they turned it every two weeks to straighten it more.

Brandon is still active in Special Olympics – he bowls and does the spring games. He has won a lot of medals. He is also active in Boy Scouts, too. He loves to go to Boy Scout camp and their camp outing. Brandon is still the number one selling in Boy Scout popcorn, each year.

Brandon’s little sister, Brittany is in the 6th grade and loves middle school. She is a BIG help to Brandon. She is active in Girl Scouts, basketball, indoor soccer and swimming.

Brandon and his dad, BJ has a hobby that they enjoy. They race RC trucks and cars year around. This past summer BJ build a track at our house for them to race and practice on everyday. Brandon got a new truck for his birthday money it is called a Wheelie King.

We still have Katie our mommy goat, we lost Billie last winter. But this past Spring we mated Katie and she had twins, a boy name Nibbers, and a girl name, Sugar. They are so cute. We are hopefully going to have some more this spring, too.

Just wanted to let everyone on MACS webpage know that we are so grateful for the cards and gifts over the years. You have put a sparkle in Brandon’s eyes.

We live day by day and don’t worry about tomorrow. We pray each and everyday for a cure for A-T and for all the children on the MACS webpage. Also, we are thankful for each day, too.