A 10-year-old boy in Colorado will be ringing in the new year with a new kidney, and his parents couldn’t be more relieved. Marcus Root suffers from cystinosis, a rare disease that occurs when the body can’t break down the amino acid cysteine which then accumulates in the kidneys, eyes, liver, and other organs.
End stage renal failure (kidney failure) is common, and most children with this condition do not live into adulthood without a kidney transplant. About 1 in 100,000 to 200,000 newborns worldwide have the disorder. Oddly, more people who live in Brittany, France, are affected by it (scientists don’t know why!): 1 in 26,000 individuals.
But Marcus lives in beautiful Canon City, Colorado, best known for its proximity to the Arkansas River’s breathtaking Royal Gorge. And his story has a hopeful ending… that speaks of new beginnings. Others, however, are still waiting for a kidney donor match.
If your child has cystinosis, getting the support you need is very important, and connecting with other parents is a great way to do that. For more information, contact the Cystinosis Research Network. They also sponsor a support group for teens. RareConnect offers a safe patient-hosted online community for patients and caregivers affected by this rare disease. For more information, visit www.rareconnect.org.
If you would like further information, contact any of the organizations listed below.
- Cystinosis Foundation, Inc.
- Cystinosis Research Network, Inc.
- Cystinosis Research Foundation