Seven-year-old Sarah Larimore suffers from a rare genetic disorder called cystinosis, which prevents her from sweating. The disorder also causes other problems like kidney failure, rickets, muscle wasting and stunted growth. If the young girl goes out in the South Carolina sun for more than a few minutes she becomes over-heated and dizzy. She is mostly confined indoors and takes 33 medications a day to help treat her condition.
Sarah’s parents have struggled to make life easier for their daughter. One thing that seemed to help was building a pool in their backyard last summer, reports The Daily Mail. “It was her first real, live outside summer,” said her mother, Katie Larimore. “She just stayed in the water for three months.”
By the time Sarah is a teenager, she will need 80 pills every day. Doctors also believe that she will require a kidney transplant by the time she is 15. Life for her isn’t very easy now either. She eats through a feeding tube in her stomach, gets 14 eye drops a day to prevent blindness and takes Cystagon, a medication that makes her breath stink. The smell even seeps through her pores, her mother said.
Jeff Larimore, Sarah’s father, is the president of Cystinosis Research Network. The network helps families with children with the condition. The Larimores have four children. Sarah is the only one with the condition. She is one of 500 Americans with the condition and one of the estimated 2,000 people who suffer from the illness worldwide.
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The Larimores aren’t exactly sure what is going to happen to Sarah, but they remain hopeful. “Her prognosis is unknown,” Mrs Larimore said. “Technically, cystinosis is considered terminal because there is no cure. Jeff and I don't like to think that way. So, we just go with the idea that there’s no expiration date stamped on her anywhere.”
Source: (The Daily Mail)