This is a personal crowdfunding request. This is their story in their own words:
April 25, 2013 along with my Husband and our son Nicholas, we welcomed Wesley into the world. Within 24 hours our whole world was turned upside down. We were told our son was born with Aniridia, meaning the lack of an iris(colored part of his eyes). Further testing confirmed that his Aniridia was caused by a syndrome that has less than 400 documented cases worldwide. WAGR syndrome is a rare genetic syndrome in which affected children are predisposed to develop Wilms tumor (a tumor of the kidneys), Aniridia (absence of the colored part of the eye, the iris), Genitourinary anomalies, and mental Retardation. With this diagnoses come a long list of predisposed conditions, along with each case being unique on its own. In Wesley's case he also has Coarctation of the aortic, a congenital condition whereby the aorta(in his heart) narrows in the area where the ductus arteriosus inserts. Plagiocephaly, uneven flattening of one side of the back of the head, combined with an uneven bulging of the forehead on the opposite side of the head (which was corrected with a cranial molding helmet that he wore for 5 months ). Penile torsion (wandering raphe) consists of a counterclockwise rotation of the penis, meaning he has had surgery to correct his penis along with circumcision and placement of his undescended testicle. A future surgery will also take place to locate his other testicle that is in his abdomen. He has cataracts starting in both eyes and is being monitored. Tongue-tied, which was surgically corrected. Wesley also has out patient physical & occupational therapy weekly on top of his early intervention program coming to our home. Our lives have been total chaos. Many, many, many appointments, tests, specialist, therapies, surgery and sleepless nights. Among all the chaos we have a little boy who melts our hearts, always smiles and has taught us so much about life in just a short time.
Wesley and his family are in need please donate today!