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.”
The foul taste and smell of Cystagon caused Camden to refuse ingesting it, so a stomach tube was implanted through his abdomen as a way for him to tolerate the medicine.
“He is now on a new drug called RP103, which he has to take every 12 hours and isn’t as harsh on his stomach. We were hoping this new drug would extend his kidney life as long as possible,” John said. “He still takes nine other medicines each day. He has to take 420 pills and a half gallon of liquid meds per month.”
Camden attends Midway Elementary School and is known as the class comedian. Now in stage 3 renal failure, the Sanders family hopes to prolong the day Camden will need a kidney transplant.
“With everything he deals with, he is a trooper,” John said. “There is very little funding from any type of government agency, so parents start foundations and we pool our money together and put out grants to doctors and scientists to help find a cure.”
In December 2011, the Sanders family created Help Camden Find A Cure, a nonprofit organization to help raise awareness and funds for research. The local organization has donated more than $14,000 to the Cystinosis Research Foundation since.
“[Midway Elementary Principal Antonio Ingram] donated over $600 in March this year by having a Dress Down for Camden day,” John said. “I would like to thank my mother Marie Sanders who has been there and helped with fundraising along with a good staff of volunteers. I also want to thank Jojo, Camden’s babysitter who has taken care of him since the age of 1, because without her our son would have died or would have been in worse condition than he is now.”
For more information about cystinosis, or to donate to Camden’s foundation, call (478) 972-0171, or visit www.helpcamdenfindacure.com.
“Camden brings a lot of laughter to everyone he meets. I think he handles what he has very well, even if he does take nine medications per day and one shot per week. He is a real trooper, and even on his bad days, he will still put a smile on your face,” John said. “There would be nothing better than to find a cure for cystinosis. It’s a scary thought waking up each morning wondering how long my son has to live. It is my goal to make sure Camden lives a long life, even if it means he gets both of my kidneys.”
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