Roar with Isaac Fundraiser – Bravelets

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Roar with Isaac Fundraiser

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About this cause:

In June 2014, at 4 months old, Isaac was diagnosed with Spinal Muscular Atrophy (SMA) Type 1. SMA is an incurable genetic disorder that takes away a persons ability to move, swallow and breath independently. SMA affects about 1 in 10000 babies, and it is the number 1 genetic cause of death in infants.
When Isaac was diagnosed, there was no treatment for SMA and Isaac's family was told he might not live past his first birthday. For the past 2 years, Isaac and his family have fought SMA with courage and grace.
It was recently announced that a new drug to treat SMA was completing the trail phase and would be made available, free of charge, to any child with Type 1 SMA. However, because the treatment is not yet approved by the FDA, the associated hospital costs will not be covered by insurance. Childrens Hospital Colorado, where Isaac can receive the injections, estimates that the first year of treatments will result in $70-90,000 in hospital costs.
Isaac's parents both work part-time jobs so that they can be home with Isaac as much as possible. The added cost of the drug trial is not something they can afford without help.