My name is Joshua Tolen, Captain of the Bearded Villains Indiana. We are a Worldwide Charitable Organization that does many types of charity work. I went to school with Rylee's mom, and her story truly needs attention. Someone who knows Rylee's story has donated the important part, the Hydraulic-Electric wheelchair ramp. We already have a fab shop donating time and supplies to retrofit the ramp into the van we purchase.
Rylee has to go to Riley Children's Hospital several times a month, and sometimes a week. It has become very risky and almost impossible for Brandie to do alone. This is the story of Rylee...
Rylee was diagnosed with a terminal illness called Leigh’s disease (a rare form of Mitochondrial disease) when she was almost 3. She was given 6 months to a year to live but has done exceptionally well until March of 2015. She became very sick and after several hospital stays she came home with a feeding tube, could no longer walk, or do anything on her own. She also can no longer attend school. Brandie quit her job to be home to care for Rylee. They got a new wheelchair to accommodate her new needs but have to take it apart to put it in her vehicle. “It’s very hard for me to take her out alone, especially if she is having a tough day. There are so many things that this disease affects. We had an MRI in March that showed little change and another in June that showed definite disease progression.”
This is what Brandie said to me:
“At this point I just need a little help making things a little easier for my daughter and getting her where she needs to go safely and easily.”-Brandie, Rylee’s Mom
The family as you can imagine has pride and hasn't asked for help. Her close friends have reached out to me and asked that we do this. The family has applied for government assistance and aid but it could take up to a year to actually get the help they need. This is something we as a community and as caring people can do for the family. It will make an immediate impact on their lives. All donations help, and we will get this done for Rylee!
We are going to run this campaign for a month. The funds will be used to secure a van that is suitable for the retrofit and will ensure the safe and effective transport of Rylee. It would mean so much to Brandie who physically loads and unloads her out of her wheelchair and into her current vehicle. Rylee is growing and it is risky doing it alone. Rylee needs this ramp for comfort and safety. The least we can do is make these trips logistically easier and safer for Rylee and her family.
Thank you for reading about Rylee, and I hope you can find it in your heart to help this family! Have a great day!