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DEARBORN -- For three years, 7-year-old Kacy Wyman has been L-Cystine/L-CYSTINE_56-89-3.html">L-CYSTINE living with a disease she has no control over, cystinosis.
It is slowly destroying her kidneys, creating the need for an organ transplant L-LYSINE HCL MONO in about two years.
¡°When Kacy turns L-LYSINE 9 she will need a kidney transplant, and it feels like a train wreck because I can¡¯t do anything about it,¡± said Kacy¡¯s grandmother Cindy Pena.
Wyman was diagnosed with the rare life-threatening disease at the age of 4.
Only about 2,000 people have been diagnosed with the he metabolic disease.
The problem is caused by an abnormal buildup of the amino acid cystine in various organs. Accumulation causes Cystine crystals to fill the liver, eyes, kidneys, muscles pancreas, white blood cells, and the brain.
The disease is inherited in an autosomal recessive fashion, meaning that each parent of a child with cystinosis carries one defective gene and one normal gene. The parents never have any signs of the disease.
Without specific treatment, children with Cystinosis develop end-stage kidney failure at approximately age 9.
Every hour Kacy needs eye drops and takes a variety of medications, as well as sleeping with an IV attached to her arm all night.