Our Story began in December 2002 with the birth of our beautiful son, Justin.

Nicole, our daughter was thrilled to be a big sister. For the first week after Justin was born, we were busy with lots of visitors wanting to meet the new baby. It was during a visit with our friends that we received the phone call from our doctor that would change our lives forever. We were asked to come and see him immediately as there was something wrong with Justin. When we got to the doctor's office we were met not only by our family doctor but also by a pediatrician. They explained to us that Justin had a disorder called Medium Chain Acyl Co-A Dehydrogenase Deficiency (MCADD) and that it had been detected by something called newborn screening (NBS). We also found out that Saskatchewan was one of the few provinces that were screening for MCADD. We couldn't believe that all provinces weren't using this wonderful tool to help save lives.

Since that time, we have met a wonderful Metabolic specialist and wonderful staff at the children's hospital in Saskatoon. The told us about the fatty oxidation disorders support group, which of course we joined. From this group we learned about other Canadian families whom have endured tragedies due to late diagnosis of their child's metabolic disorders. It not only breaks our hearts, but frustrates us, when we hear of another child that has lost his/her life due to something that can be detected with NBS and treated.

If it wasn't for newborn screening, we would not have known about MCADD until something drastic happened to Justin. In December 2003, because of chronic ear infections, Justin needed tubes in his ears. Although it is a fairly simple procedure, extra precautions were taken because of Justin's MCADD. We were admitted the night before the procedure so that Justin could be hooked up to an IV while he fasted.

This simple procedure could have caused Justin to go into a metabolic crisis had we not known about the MCADD.

Thanks to newborn screening we can manage Justin's MCADD and watch him grow and enjoy new milestones in his life.

Lori and Darren Clapson

Proud Parents to
- Justin (MCADD)
- Nicole

Prince Albert, Saskatchewan