McKenna's Story

In July 2006, when McKenna was first born, we thought “we got this”. After all, we had one year of parenting with our son Wade nearly in the books and with our baby girl just coming into the world we thought it would be nearly the same routine.  Oh how wrong we were! As we were just settling in at home with our new addition to complete our family, we received a phone call that changed everything we knew about parenting. The doctor told us that we need to come in for an immediate appointment. At the time I was beyond confused as to why she needed a new blood test. She was already scheduled for a follow up at fourteen days old.  Why now? What did this mean?  No one had any answers regarding our seven-day old daughter.

During the emergency doctor appointment, I was told to feed her every two hours around the clock (yes, all night too) and head to a specific hospital’s emergency room if she stops eating or can’t keep the feedings down or becomes lethargic. Forty-eight hours later I received a follow up call from the dietitian with the State of Nevada. What she went on to tell me completely changed our lives. The diagnosis was Medium Chain Acyl Dehydrogenase Deficiency, confirmed after DNA testing. A lot has happened over the past nearly eighteen years. But I am not here to go into everything that happened but to reflect on why we are here now. 

This week McKenna graduated with high honors from the number one high school in our state and spent her senior year as not only Student Body President but a three-sport high school athlete in addition to club soccer. She has also participated in FBLA, DECA, National Honor Society, School Ambassador and so much more.

So how did we get here?  This comes back to that phone call I received from the State of Nevada back in 2006. The best thing I took from that phone call was to contact Deb Lee Gould with FODsupport.org. The things Deb and Dr. Roe have done for all of us before we even knew about Fatty Acid Oxidation Disorders, Is Why We Are Here Now!

Our family is beyond grateful for not only the support from the community Deb has created but for the way she and Dan turned their grief into one of the most amazing support systems connecting the newly diagnosed families and the grieving families with the doctors, nurses, scientists and medical community that is changing how we live with an FOD.

One last thing, McKenna will be attending college in the Fall. She plans to become a dietitian and help families like us better understand the connection between foods and disorders like Fatty Acid Oxidation Disorders.

Thank you, Deb, we are beyond grateful not only for you but also Dan, Kristen, Kevin, Brian, Dr Charles Roe and everyone else that helped us all get here now!

Leigh, mom

June 2024