Trevor was born with a rare, life-threatening metabolic disease called
Very long-chain acyl-coenzyme A dehydrogenase deficiency or VLCADD for short. We were notified during the middle of the night when he was just 10 days old that
we had to rush our seemingly perfect newborn to the emergency room or he would
die. The routine newborn screening test caught this potentially lethal illness
before we even knew anything was wrong. Imagine arriving at the emergency room
of your local Children’s hospital to find out that as you waited for your child
to be admitted, the doctors were looking up your child’s illness on the internet
because they had never heard of it or seen a case. We have been lucky. Our son, Trevor, has celebrated four birthdays. Others have not been so lucky. We learned that our genetic specialists were modeling Trevor’s treatment and progress after the success they were having with a little girl from South Louisiana. Sadly, she died before she turned three years old because emergency room workers would not listen to her parents or adhere to her Emergency protocol letter when she arrived. In fact, the ambulance would not even transport her because they said she looked fine. Trevor, at four years old, is now the oldest patient in Louisiana with VLCADD, and the doctors are using him as a model for care. He has had eleven stays in the hospital, each time requiring an IV with a special sugar called D10. His stays last approximately one week each.