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Shutdown delays review of Hannah's treatment

REXFORD -- The Sames family has spent the last five years raising money toward a treatment for 9-year-old Hannah after she was diagnosed with giant axonal neuropathy in March 2008. The treatment developed by researchers was going to be reviewed by the National Institutes of Health Review Group on October 25 before a clinical trial, but it will be delayed because of the government shutdown.

She asks when is the medicine going to be ready. Why are you and mom so frustrated, said Matt Sames, Hannahs father. [I tell her] we're working as hard as we can and as fast as we can and just hope and pray that things get done quickly.

Back when Hannah was first diagnosed there was no treatment or support group, so the family formed their own called Hannahs Hope Fund. So far they have raised $6 million toward a treatment and were preparing for clinical trials later this year. One of the final steps is the review.

If they come back with questions it could delay us even further, but we've done the heavy lifting and thats the frustrating part is that now that there's no one to actually process the paperwork and more it along we're stuck, said Sames.

Even if the government opens before the October 25 the NIH will face a backlog delaying clinical trials. Hannahs GAN is a more rare form that is slated for phase two of the trials, which will likely begin in the spring.

We're racing against the clock, so every day it gets harder for her to get ambulatory, said Sames. Its starting to impact her vocal cords so it's something that we don't have a lot of time and every day that goes by that she's not treated is not such a great day.