Resolution aims to raise awareness of rare diseases

Resolution raises awareness of rare diseases.

BOISE - The mother of a 2-year-old boy diagnosed with a rare genetic disorder is behind a resolution at the Idaho Statehouse to help other families in similar situations.

Tonya Harvey says her son Kyler was diagnosed with the neurological disorder last August.

Bbecause of the severity and rareness of the disorder, Kyler travels all the way to Seattle Children's Hospital for treatment.

Harvey says that's an incredible burden on a family.

The HCR 9 resolution aims to raise awareness and to start a conversation about supporting efforts to alleviate the effects of rare diseases on Idahoans.

It's also aimed at supporting recruitment and retention of medical specialists in rural parts of Idaho.

One of the efforts being talked about is a form of telemedicine - virtual clinics and video-conferencing - so that families don't have to travel hundreds of miles for treatment.

"Being able to be managed by Seattle Children's and stay here in our home and work and still be able to manage our daily life, that's huge," Harvey said. " It's huge. The burden and stress and isolation, the struggle is real."

The resolution - backed by democratic Rep. Melissa Wintrow - passed in the House and will be heard Tuesday in the Senate.

 

 

 

© 2017 KTVB-TV


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