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Medicines for Children

Channing’s Story: Surviving at 3; Thriving at 9

Channing O’Halloran

Channing Now: Today, Channing is a thriving 9-year old, thanks to successful treatment at the NIH for her rare genetic condition.
Photo Veronica Lukasova

Channing O’Halloran at age 3

Channing Before: Channing O’Halloran, age 3, outside The Children’s Inn, after a long day of treatment at the NIH Clinical Center in 2006.
Photo Veronica Lukasova

Before she was 1, Channing O’Halloran was diagnosed with cystinosis, a hereditary illness found in fewer than 1,000 children worldwide. It used to be a death sentence for kids before they reached age 10. But thanks to her mother, who wouldn’t accept that scenario, at age 3 Channing came under the care of NIH researcher Dr. William Gahl, a leader in the treatment of cystinosis. The family stayed at The Children’s Inn while he developed the therapy that today enables Channing, now a confident 9-year old, to do well at school, take ballet, model, and shine on stage. At a recent school chorus performance, Channing noticed a boy wasn’t wearing his chorus dress clothes. When the boy confided to Channing that he had “stage fright,” she advised, “I love being on stage. You should stand by me, and maybe you’ll get some braveness.”

Although she is still a little girl in danger, Channing takes her medicine every six hours, even waking herself at 1:30 every morning to take her pill. Says Dr. Gahl, “A researcher needs to have access to the people like Channing who have the illness. Here at NIH, the children can come for free, stay for free, and be treated for free. There’s nothing to compare to that anywhere else.”

Read More "Medicines for Children" Articles

Channing’s Story: Surviving at 3; Thriving at 9 / Developing Safe and Effective Medicines for Children / The Importance of Children in Clinical Trials / Cokie Roberts Cares about Kids!

Winter 2012 Issue: Volume 6 Number 4 Page 3