Lucas was born in February of 2016. Already, he has taught us about unconditional love, determination, and the wonderful power of a smile.
Luke had been in and out of the hospital since he was born but nobody seemed to understand why. At six months old Doctor Wargowski, a geneticist from The American Family Children’s Hospital, diagnosed Luke with a rare neurological disorder called MECP2 duplication syndrome.
The day we found out the diagnosis was extremely hard for our family. We felt alone and wanted answers but nobody was able to provide them. It was in the following weeks and months that we came to realize we must become the experts on this rare MECP2 Duplication Syndrome and educate his medical providers. Since then we have visited the wonderful Physicians at The Texas Children’s Hospital and Dr. Zoghbi to gain better insight into Luke’s conditions and about the many challenges that lie ahead. We have also had the pleasure to meet other children and their families who share in this challenging journey, which have been a tremendous resource and support to us.
Luke has made up his mind that he is going to fight this disease and we are ready to do whatever it takes to fight alongside of him.
Please join us and help Luke beat MECP2 Duplication Syndrome!