Submitted by her mom McKenzie, RyLee and her family were the next family in our 2020 Holiday Giveaway.
RyLee was diagnosed at birth with VLCADD found from doing her newborn screen. We got a phone call a week or two after she was born letting us know of her diagnosis. VLCADD is a diagnosis where the body has trouble breaking down certain kinds of fats that effect energy. A serious diagnosis of VLCADD can cause muscle issues and heart issues. Our family had never heard of VLCADD before, but her team of doctors at Boston Children’s Hospital were very helpful in educating us of the disorder and all it’s possible effects.
RyLee luckily seems to have a mild condition so far in her life, and she continues to be monitored every six months. This condition is rare and still, a lot is unknown. RyLees doctors were able to tell us that one of her genes is mild but the other is unknown. It was and still is scary for our family to navigate this condition with all the unknowns and because it is not something that you can physically see. RyLee takes a fat supplement twice daily to help her breakdown fats and it’s followed by a metabolic doctor and nutrition doctor and as she approaches her 4th birthday, she is happy and healthy so far and we are grateful for that.
My family and I would like to say a special thank you to Cheyenne and Cory and the Rage Regardless Ry fam for making the holiday extra special this year and for all they do to bring awareness to metabolic conditions.