MILLEDGEVILLE — Camden Sanders appeared to be healthy baby boy when he was born Oct. 24, 2005, screaming with a head full of bleach blonde hair. His parents, John and Amanda, noticed he was small during his first few weeks, but did not put much thought into checking into his health.
“For the first few years, he was very bad about throwing up anywhere from five to 10 times a day. We actually dressed ourselves in garbage bags to avoid the vomit during feedings. He would drink a bottle and throw it up, and the next bottle would stay down. We decided that he may be lactose intolerant, so we tried soy milk, which did help some. Camden was almost a year old when he sat up and several months later he started walking,” John said. “We thought he may be diabetic as he drank so much and his urine output was unbelievable, however, the pediatrician always said his sugar level was fine. We took him to the doctor again because he continued to throw up so often, but if that doctor had drawn blood and did a full panel on him, he would have discovered that his electrolytes were out of whack and that might have helped with a diagnosis.”
In February 2010, Camden visited the hospital for what was to be a simple appointment, but his potassium level dropped so low that doctors were concerned he was in danger of having a heart attack. Camden was diagnosed with cystinosis, a rare genetic abnormality in which the body accumulates the amino acid cystine within cells. Excessive cystine forms crystals that can build up and damage cells, negatively affecting many systems in the body, especially the kidneys and eyes.
“This is a terminal disease. There are only 2,400 cases worldwide with two kids in Milledgeville, and one has had a kidney transplant already,” John said. “If you look at Camden’s eyes with a high power camera, you can see little crystals. Ever since he was diagnosed, he has been on a very heavy medicine regiment. We started Camden on Cystagon, which we gave to him every six hours punctually because it would peak out and drop to a lower level. For two years straight, I never got more than five hours of sleep in a night.”