Duke Stanger's Fight for Life
Donation protected
On April 15th, 2019 our lives were changed forever. We received a phone call that our son Duke was diagnosed with Spinal Muscular Atrophy (SMA) based on his newborn screen at just 3 weeks old. Though our family did not know much about this horrific genetic disorder, we have learned quite a bit in the following months. SMA is due to a mutation in the survival motor neuron (SMN1) gene that produces protein that is critical in the function of the nerves that control our muscles. Without that gene, those nerve cells cannot function and will eventually die. This leads to debilitating muscle loss, that can lead to death. With SMA, each day is critical as each day that passes, survival motor neurons could be dying to never again be reversed. On May 24th, the FDA approved the world's most expensive drug - Zolgensma. Zolgensma is a one time gene replacement therapy that will enter the body as a virus to deliver a copy of the missing SMN1 gene. Duke has a wonderful team of doctors at Nationwide Children's Hospital in Columbus, Ohio that all agree that Zolgensma is the best treatment for him.
We are both public school teachers at Monroe Local Schools and our insurance is through Anthem. Our insurance policy is managed by Butler Health Plan. Butler Health Plan has chosen to make gene therapy an excluded benefit, which means they will not provide coverage for Duke to receive Zolgensma. We are currently in the appeal process, which takes 30 days. We have been fighting the fight since the moment we received the denial letter stating that gene therapy is an excluded benefit. If Zolgensma is denied yet again for our son, we are asking for help from anyone that is able. We must pay for this drug out of pocket. We are desperate for Duke to receive the treatment that will save his life!
Please watch the informational video below that explains Gene Replacement Therapy:
https://www.youtube.com/watch?v=iBmyXr_o1hU&t=21s
Disclaimer: If the insurance does come through and covers Duke's treatment, the funds will be used to cover his medical costs and attorney fees. The remaining funds will be donated to support other families in the SMA community.
We are both public school teachers at Monroe Local Schools and our insurance is through Anthem. Our insurance policy is managed by Butler Health Plan. Butler Health Plan has chosen to make gene therapy an excluded benefit, which means they will not provide coverage for Duke to receive Zolgensma. We are currently in the appeal process, which takes 30 days. We have been fighting the fight since the moment we received the denial letter stating that gene therapy is an excluded benefit. If Zolgensma is denied yet again for our son, we are asking for help from anyone that is able. We must pay for this drug out of pocket. We are desperate for Duke to receive the treatment that will save his life!
Please watch the informational video below that explains Gene Replacement Therapy:
https://www.youtube.com/watch?v=iBmyXr_o1hU&t=21s
Disclaimer: If the insurance does come through and covers Duke's treatment, the funds will be used to cover his medical costs and attorney fees. The remaining funds will be donated to support other families in the SMA community.
Organizer
Sarah Stanger
Organizer
Monroe, OH
