My name is Andy and I live in Louisville, KY with my wife Amber, son Zack (LCHAD), son Ben (LCHAD Carrier) and daughter Abby (LCHAD). As you can imagine, life is hectic with three children. Especially, since two of them have a very rare metabolic disorder called LCHAD.
When Zack was born, KY did not screen for many serious life threatening conditions, including LCHAD. Imagine our surprise when Zack, after months of illness and failure to thrive was diagnosed with a very rare metabolic disorder. LCHAD is so rare that most doctors will never treat a patient with it in their career.
The prognosis was bleak when Zack was initially diagnosed since not much was known about LCHAD. However, as time went on we learned how to manage Zack’s disorder. Today he is a happy, healthy and talented boy!
That being said you must remain diligent, strong and realize that LCHAD is not something to be played with. You must follow a strict treatment plan and followup by specialists. Even with this there will still be many ups and downs. Many sleepless, worry filled nights and many trips to the ER.
It’s easy to become discouraged when you have two children with a serious metabolic disorder. However, I feel so lucky and blessed that we have a strong network of family and medical professionals that help us navigate through life’s challenges.
After several years my wife and I decided we wanted to expand our family and we were blessed with our 2nd son, Ben in 2009. Luckily, Ben is just a carrier for LCHAD and not affected. In 2011 we welcomed Abby to our family who like Zack has LCHAD.
I thank God every day for our many blessings, his protection and guidance. Each time one of our children is in the hospital I am reminded by how precious life is and to always be thankful for what you have.
In closing, immediately after Zack was diagnosed the only literature available for LCHAD described a bleak prognosis. We found one beacon of hope in the personal story of Adam, who at that time was around 10 years of age. His parents gave us hope that LCHAD was not a death sentence and can be managed. It is that hope that I wish to give when other parents might stumble on this site in desperation after learning their child has LCHAD.