Parents fight for daughter’s life

Sarah Larimore, diagnosed with cystinosis at 15-months-old, likes to play with her dolls and watch Monster High on Nickelodeon.

This article originally published 2-8-2013 at

On Monday, January 28, a South Carolina couple traveled to Washington, D.C., to speak with their representatives in Congress and ask them not to cut funding to research programs that could save their daughter’s life.

Jeff and Katie Larimore’s seven-year-old daughter, Sarah, has a rare genetic metabolic disease called cystinosis. The Larimores joined three cystinosis support groups in Washington and met with legislative aids from the offices of Sen. Lindsey Graham, Sen. Tim Scott, Rep. Joe Wilson, and Ohio Sen. Sherrod Brown. They had three requests: continue to allow incentives afforded by the Orphan Drug Act; continue funding the National Institute of Health (NIH); and continue the Medicaid program, TEFRA, that extends services to children with catastrophic diseases and disabilities.

The Orphan Drug Act allows pharmaceutical companies to invest in researching medications for rare diseases without losing money through tax breaks and financial assistance.

Cystinosis is an autosomal recessive disease, which means that both parents must be carriers for it, and there is only a 25 percent chance of producing a child with the disease at that point. There is currently treatment, but no cure for the disease, and only four children in South Carolina, 500 children in the United States, and 2,000 children in the world have cystinosis.

TEFRA, or the Tax Equity and Fiscal Responsibility Act, was established in 1982 and allows children with disabilities and serious illnesses, who would not be eligible due to their parents’ income, to receive Medicaid benefits. This program is used in 26 states, including South Carolina and only covers the affected child. The Larimores said they could not afford to pay for Sarah’s medication otherwise, which costs around $5,000 a month.

Continue reading the full article.


CRN Newsletter Signup - Popup
  1. Stay up-to-date with the latest information from the Cystinosis Research Network by joining our email list.

  2. First Name
    Invalid Input
  3. Last Name
    Invalid Input
  4. You must enter a valid email.