Just wanted to say thank you for all of the help we've received so far! The treatments are going well!
The costs are a little more than we initially anticipated, so we have raised our goal to try to accomodate. That said, we want to say a very sincere *thank you* to everyone that has contributed to our campaign. It's been so helpful to us during these treatments, and we really appreciate it.
First off, thank you for viewing our GoFundMe page. We're trying to raise some money to help cover expenses related to our son's medical treatments.
Brayden is a sweet, courageous, and fearless 5 year old. He loves riding the four-wheeler with us, fishing, and swimming.
Unfortunately, he was diagnosed with SMA (Spinal Muscular Atrophy) at the age of 2.
SMA is caused by a mutation in the survival motor neuron gene 1 (SMN1). In a healthy person, this gene produces a protein that is critical to the function of the nerves that control our muscles. Critical functions that are affected are those involved in walking, swallowing, and head and neck control. With SMA, those nerve cells cannot function properly and eventually die. This leads to debilitating, and often fatal, muscle weakness.
SMA affects approximately 1 in 10,000 babies, and about 1 in every 40 people are unknowing carriers.
At the time of diagnosis, there was no cure or treatment, but the FDA has now approved the very first treatment for SMA, called Spinraza. Brayden was recently approved to receive this treatment, which he will have to get for the rest of his life in hopes of building up the protein that is missing in kids with SMA. Despite his diagnosis, he lets nothing hold him back. He has a smile that will melt your heart and a personality that many admire. He in truly an inspiration, and an amazing little boy.
Unfortunately, there is some travel involved in obtaining treatment, and we will need to stay 3 to 4 nights in hotels for the first 3 injections and the 4th injection is a month from the 3rd one and after that they are every 4 months for life. We are using all of our vacation time at work to help cover this cost and attendance will not be an issue. However, we do not have enough vacation time to cover all of the trips and any time missed without using vacation is unpaid time.
Any money donated to this campaign will be used to pay for travel and accomodations (gas and a hotel room), as well as to help make ends meet at home with bills during this initial phase of treatment.
Thank you again!
- Jerry Hartley
- Bill Hewgley
- Darlene Case
- Greg Luna
- Savannah Marshall
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