Priest Family Strong

In April 2017, our oldest daughter was diagnosed with a disease called Leukodystrophy. At the time all we knew was that this was a rare disease affecting 1/40,000 people worldwide. It was also genetic. After much fight with Drs, we also had our other three children tested for the same disease only to find out that both of our boys ALSO had Metachromatic Leukodystrophy (MLD). Our youngest child was not even a carrier for the gene (thank the good Lord above). In September 2017, our family headed to Duke Children's Hospital to undergo testing to see if our three affected children could undergo bone marrow transplants which has positive outcomes for giving others affected with the disease a fighting chance at a "normal" life. Tests showed that our boys, Bryce (now 5) and Izaiah (now 4) both could benefit from undergoing treatment. Kathleen (now 7) was not.

In November 2017, Bryce and Izaiah were admitted to Duke University Hospital where they both went through chemo to kill their immune systems so their bodies would accept the new stem cells they would receive just 20 days apart from each other and after a long stay in the hospital, several months of Dr appointments, we were able to move to our new home in Virginia where my husband was relocated during the boys transplants.

The boys are doing great post-transplant but continue to see Drs weekly to closely monitor labs. Kathleen has continued losing abilities yet she still smiles so bright giving us hope for our future in whatever that holds for our family.