Mobility Freedom for Adelaide
Our youngest child, Adelaide, was diagnosed at 4 weeks of age with a terminal genetic condition known as Spinal Muscular Atrophy (SMA) Type 1. 90% of children with this condition do not live to see their second birthday. However, due to an incredible new treatment, Adelaide is doing very well, and instead of a steady decline in her health, she has been getting stronger and more active every day! Despite her positive response to the treatment, she has profound muscle weakness and loss of motor control, and will require the use of a power wheelchair to get around and attend preschool.
Most parents get excited about their child taking their first steps, entering a new world of freedom and exploration. Today feels like that day to us, because Adelaide's first powerchair was delivered. We are so excited to see the world open before her, but that can't happen if we aren't able to get Adelaide and her chair into the world! In order to transport both of them, we need a special mobility-equipped van, with a lift . These are very expensive and we are asking for your help to provide this very vital piece of equipment so that our little girl can get out, see the world around her, and attend preschool in a little over a year.
We have already undertaken a full bathroom remodel to make it wheelchair accessible, and are in the process of installing a wheelchair lift that will allow Adelaide to get in and out of our home with her chair. The only piece left is a vehicle that can transport Adelaide and her chair, along with the rest of our family.
See below for links regarding how Adelaide is already changing the world and the hearts of those around her, and be a part of Adelaide's Army in our war against SMA! Watch out world.....here she comes!
https://fox17.com/news/local/family-faces-desperate-options-after-tenncare-denies-coverage-for-disabled-daughter
https://www.tennessean.com/story/news/2018/11/26/children-disabilities-costs-medicaid-tennessee-tenncare-katie-beckett-tefra/1924986002/
https://twitter.com/tndisability/status/1116806800169369600