Almost 4 years ago when Peyton was diagnosed, we were at a loss. We had no idea where to turn, what to do, and how to handle the news we received. The thought of Peyton not living to see her second birthday was something we were not able or willing to comprehend. The doctors were throwing such foreign terms at us, "cough assist machine, pulse ox, bib pap, g-tube"...and the list went on. All we could and wanted to focus on was Peyton. We wanted to spend as much time with her as possible, and suck in every moment, every smile, every facial expression, every small movement she made, because we quickly learned in the world of SMA, it could be her last.
Dealing with a SMA diagnosis is the hardest thing our family has ever had to endure and you can never be prepared for it. The financial burden that SMA places on a family could be just as devastating. Just some of the costs associated with SMA are:
- Conversion van with lift- $50,000 or more
- Cough Assist machine- $3,500
- Bi-pap/Vent- $3,000
- Power chair- $35,000
- Traveling costs to see SMA specialists and Doctors
- Ipads for Education $800
- Touch to Speak
Some of these items might be covered by insurance, however, some of them won't. We wanted Peyton to have everything she needed. She deserved it! So we started doing small fundraisers in our town for her, to help us fund some of these items. Three years later we have now created the Unite 4 Peyton foundation. Our mission is to raise funds to assist in medical research towards finding the cure for SMA, along with funding grants to families to help ease the burden of SMA. We have grown so much in these last 3 years, from our understanding of SMA, to meeting new families, becoming a part of the SMA family and now it is our turn to give back. We want to help new families and those who have helped us in the past. Our goal is for every child with SMA who wants an Ipad has one. To help every family that needs help with getting a new van or lift gate. If a family wants to go to the FSMA conference, but doesn't have the funds to do so, we want to help. We have been very fortunate, Peyton is going to be 4 in April, and she has what she needs. It was a struggle in the beginning, but we turned to the countless resources that are available to SMA families for help. We now want to give back and be one of those resources also. We are so grateful and blessed to have this opportunity to help!! Please if you are reading this, and you need help, or you know a family that does, pass the word. The very last thing we want a family with SMA to worry about is money. Now, can we fund every request that comes our way? No. Will we be able to buy your family a van? No. But, what we can do is help where we can and we will continue to work hard to raise money to do so.
Sometimes it is so strange to me, to think back to three years ago. From our complete devastation and loss of hope, to now. We have learned that through every situation, every obstacle, something positive can come out of it and we are proud to be a part of it!!
I am blessed to be the Aunt of Peyton. She has changed my life in so many ways. I will fight, to save her life and the lives of so many others with SMA.