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.