BENEFITING: Stickler Involved People Inc
EVENT DATE: Feb 25, 2017
Ultimate Cycle Challenge wrote -
Stickler Involved People (SIP), the U.S. support group helping those with Stickler Syndrome since 1994. Stickler syndrome (hereditary progressive arthro-ophthalmopathy) is a connective tissue disorder, a genetic malfunction in the tissue that connects bones, eyes, and ears. This disorder is associated with problems to vision, hearing, bone and joint, facial and cleft palate.
Stickler's Syndrome has cursed our family. My husband and son both have Stickler's, and there is a long line of extended family members who suffer as well. Stickler's has affected my husbands joints and eyes. My son was born with a cleft palate and has eye issues, specifically with his retina.
At age 7 my husband's hip joints died due to Legg-Perthes (associated with Stickler's). He was in leg braces for several years and by age 10, his joints had become completely degenerated and was in major pain. He continued to suffer for the rest of his life and by age 40 decided he couldnt' take it any more. He has had both hips completely rebuilt and replaced. He has suffered with eye and retinal issues as well and has had many surgeries related to that. He is very thankful for the vision that he has today and to be pain free in his hips.
My son has had his share of suffering as well. He was born with a cleft of his hard and soft palate which has been repaired by several surgeries. We have a plastic surgery team whom we work very closely with for dental and speech issues. He has also been cursed by a multitude of eye issues. At age 8, he has had 19 surgeries. A few of them for his cleft and the rest on his eyes. He has suffered from 5 retinal detachments in his left eye and other problems associated with that. He has layed face down for over 4 months to heal a retina that just didn't want to stick. At this point, he has no usable vision in his left eye. We are hopeful that with ONE MORE SURGERY that we may be able to get some vision back. We have been given a pretty heavy cross to carry.
One thing Stickler's has taught us is that we are not in control of our lives . But, that we all have an unsuspected reserve of strength inside of us that emerges when we are put to the test. I've watched my husband suffer and perservere. I've watched my son suffer over and over again. Through it he continues to be positive, brave and couragous. We believe that there is a reason for all of this and he will do big things someday. I believe we have been assigned this mountain to show others that it can be moved. He is going to move big mountains some day!