Holden Cheetham was diagnosed with an extremely rare condition that gives him an irresistible urge to hurt himself. He has been diagnosed with other conditions as well, and doctors have been doing their best to relieve some of the dangerous symptoms. Despite the difficulties, his parents are staying positive and hoping he recovers well.
Holden was born on September 13, and he was diagnosed a few days later with Lesch-Nyhan syndrome. The rare condition is caused by a mutation of the genes, so there is no current treatment for it. Children with the disease cannot control their own muscles. As the baby develops, the condition affects their ability to walk and talk; it can even prevent them from doing those things at all.
I had the pleasure of meeting Mr. Grayson Early today.— Alexis Goree (@AlexisKBOI) May 21, 2019
Grayson and his family share their journey with Lesch Nyhan syndrome. And how he POWERS through it all!
FULL STORY: https://t.co/I5mbC8WNfa pic.twitter.com/mPV8sZ3pYl
Doctors told his parents, Jaide and Ashley, that they may need to remove his teeth to prevent him from biting himself. Holden is prone to chomping down on his lips and hands, and wounding himself that often will worsen his health. These symptoms, however, are not as life-threatening as his other medical conditions.
Kidney failure is mainly what keeps Holden in the hospital. Children with Lesch-Nyhan syndrome get kidney stones, and kidney failure is common as the kids get older. Holden, however, had kidney failure almost straight away, something uncommon in those with Lesch-Nyhan syndrome. He is currently receiving treatment in the hospital, and his parents are anxiously waiting for good news from doctors. Unfortunately, more bad news came when they were told that cerebral palsy is a symptom of the condition, so there’s a chance that their son will not be able to walk.
Medical professionals who specialize in rare diseases say that Holden’s condition is rare, but it is easily identifiable. The symptoms and characteristics are so dramatic and awful that doctors can recognize it immediately even though they have not encountered it before. In that light, it was good that doctors were able to identify the disease and begin treatment right away. Holden has been allowed to go home, and a clinical nurse comes over to give him his medication and monitor his condition. His grandmother set up a Givealittle page to help his parents with the expenses of his treatment.