Mowat - Wilson Syndrome

My baby Blake was diagnosed with Mowat-Wilson syndrome: a genetic condition that affects many parts of the body. Major signs of this disorder include distinctive facial features, intellectual disability, delayed development, an intestinal disorder called Hirschsprung disease, and other birth defects.

With only 300 cases in the world there is not alot of information to go off of. The money will be used to purchase airfare, hotel and admission to a 3 day conference in Arlington, VA to attend The Mowat Wilson Syndrome 2017 Conference where we would attend workshops, Q&A sessions and activities for parents, individuals with Mowat-Wilson Syndrome and siblings. Guest speakers include Dr. David Mowat and Dr. Margaret Wilson among many other specialists that will speak on topics that affect most families like: Bowel Management, Mobility, Adaptive Technologies, Advocacy, Grieving and Stages of Acceptance, Epilepsy, etc. It will be a great opportunity to meet other families and exchange experiences please help us reach our goal and help our baby hit his milestones. Thank you!