Thanks to medical science there is now a treatment called Spinraza. This is not a full cure, but it will restore a protein my body is missing. It might not seem like much, but to me Spinraza is the equivalent of removing SMA from my body. It allows me to take control and apply what I have learned to try and undo what has happened.
If you know me, then you should know that I do not typically see SMA as a disability. I have done more, seen more, and been able to experience more from my wheelchair, than others in a perfectly able body. I have also learned to look at SMA or my wheelchair as a superpower. I have definitely grown comfortable with SMA. It feels weird thinking that SMA is coming to an end, and it is time for things to change (the only constant in life is change).
With Spinraza being so new, it is not yet fully covered by most insurances, and it is very expensive. With the help of the pharmaceutical company (Biogen), and my insurance I will finally be able to start receiving Spinraza. Being able to take Spinraza I would like to focus on a rehab program of my own making. I would also like tribute this year to SMA by making small videos and talking about what it is like to live with SMA.
The rehab program is very rigorus to get the best from Spinraza. I am applying everything I have read, studied, and learned over the years. I am hoping for a fun year of exploration and what my body will be capable of. This is my opportunity to change my body and break out of this cocoon I have created.
Outside of medical and insurance expenses, the total cost for equipment, PT, production, and help for the year will be closer to $24,000. The purpose of this page is not to raise all of that, but to hopefully get started on part, in order to get things rolling. I am deeply grateful for anything you can contribute!
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