My Story

My name is Dominic Doering, I was born on 4/3/2008. In the first few days of my life like most newborns I was very sleepy. My Mommy & Daddy started noticing that I was barely waking for feedings and were going to let my pediatrician know for my first appointment the very next week. On the 6th day of my life they received a call from the Peditricians office, my newborn screening came back with an abnormal result for a rare genetic disorder Very long-chain acyl-CoA dehydrogenase deficiency or VLCAD and the Doctor's office said they need to contact Children's Hospital right away. They called and explained how I had been so sleepy and not eating well and they said we needed to go to the ER as soon as possible. My parents were very worried. I spent the next 24 hours being a very brave boy getting Iv's, lots of blood drawn for testing. Once I was on the IV I was a different baby, alert bright eyed, Mommy & Daddy had never seen me awake for more than a few minutes from birth. The next morning with Mommy & Daddy up all night trying to sleep on 2 chairs put together, they finally met the special Metobolic Genetisist Doctor that I will now see for a very long time. They confirmed that I do have VLCAD and that I will need to be on a special diet for the rest of my life combined with a MCT Medium chain triglycerides suppliment so that I can have the fat that my body can use since it cannot use Long Chain fat. I am missing the enzyme that breaks down fat using it as energy. So it is very important that I do not go with out food for very long and that I stay well hydrated. It's also important that if I get sick or cannot eat that I go to the hospital for an IV and to be watched until I am all better. I will have to eat low fat food and watch what I eat but Mommy will come up with some good recipes for me so that I can eat yummy things still. Thank you for visiting my page!

More on VLCAD http://ghr.nlm.nih.gov/condition=verylongchainacylcoenzymeadehydrogenasedeficiency