The financial journey of having a child with a disability has been cumbersome to say the least, we will never be done with this part of the disease as we will forever be fighting a genetic condition that requires specialists and therapy but I wanted to share what shocked me about SDR.
The first time Annie had an MRI, we were in the process of searching for answers. I was crying all the time, every time Annie had play dates with other kids that could walk or do things she could not do yet, every time we went shoe shopping and she cried over flip flops or cute dress shoes. I kept wondering what her future was going to look like. My worries at the time were not about whether or not we had the right insurance or could afford the tests but about my child's future and how could I help her best?
A month later we got the bill for the MRI, in one test, one single test we maxed out her deductible ($5,000) and between the deductible and the co-insurance, we were on the line for almost $10,000! I was shocked and worried about how we were going to make it work. I called the hospital and applied for financial aid. The financial aid most hospitals offer for families who need help and it was approved! I ended up paying $800 instead of $10,000!
Needless to say when I called St. Louis Children's and they told me that my insurance might not cover the surgery, I immediately asked about financial aid. They told me that almost every patient ends up fundraising for this operation and there is no program set up for kids that need SDR. I was shocked, scared and not sure if we could ever come up with that kind of money.
Crowd funding is a full time job, its so easy to tell someone to start a go fund me but I applaud these moms and dads that have successfully campaigned for their children.. but many families do give up and just cannot afford it. These beautiful and wonderful children of ours cost a lot to begin with, from therapy to specialists and other testing we are forever paying medical bills.
Because of this, I want to do something bigger than just fundraise for Annie. We want to start a foundation called Annie's Miracle Foundation to help other children with HSP and CP pay for SDR. I am already in the process of speaking to an attorney and I hope that we can spread the word everywhere we go.
First and foremost the money donated will go to Annie's SDR but once her surgery is over we plan to tie the remaining funds into a non profit foundation to benefit children who need SDR.
Come follow Annie's journey, be part of her story and maybe, just maybe help other children take their first steps without spasticity and pain.
These kids and families deserve it. Together, we can change the world :-).