My Personal Fundraising Page
Most of you know of, or have been right by our side, through our journey with Spina Bifida and my daughter Neriah. We are currently raising awareness for Spina Bifida by participating in the Walk~N~Roll event. This event will not only raise awareness but collect donations for the Spina Bifida Association of KY. Why donate? Why not! They have helped my little family in more ways than I can count.
When Neriah was born, she had to have multiple surgeries. Once I was released from the hospital, we attempted to stay in the Ronald McDonald House since we were so far away from home. Unfortunately they were completely full. There was no way we were leaving her side, so we spent the night on the floor of the hospital waiting room. The next morning the Spina Bifida Association of KY sent a mom to visit who had already been through what we were currently going through. She brought us gifts, food, hospital survial kit type stuff, advice, and support. She was exactly what we needed at that exact moment. Although we have a great support system through our close family and friends, unless you're a parent of one of these kids, there is so much that you just cannot understand. She got it! She understood! She knew the horrible things these doctors were required to tell us. She knew that most of what the doctors told us would not be completely so. You read and read, google and google until you're crazy! You read forums and compare your ultra sound pictures to other kids that have the same level just to be told that it doesn't really matter. There is a reason this birth defect is referred to as the "snowflake" birth defect.
Once she realized we were sleeping on the floor, they paid for us to have as many nights as we needed in a hotel room next to the hospital. I cannot even begin to type or describe the amount of relief...to this day I still dont have the words (imagine your day-old baby fighting for her life without you being there). We were able to focus on our daughter and her surgeries. They gave us a place where we could go to grieve, cope, and have privacy in the most difficult time of our life at that point. This was just the first day the Spina Bifida Association was brought into our lives. Neriah is now 6 going on 16. She is the happiest little girl in the world and doesn't let anything stand in her way! The Spina Bifida Association has been right here every step of the way.
They have amazing programs/events that not only reach out to parents, but also adults and children living with spina bifida; as well as their friends and family who have also been affected. One example would be their Growing Up With Spina Bifida events. While the parents are being provided with essiential information to help them prepare their children with the many obstacles that they may have to face, the kids are also learning and meeting other kids just like them. Both our daughter and our son love it!
The Spina Bifida Association of Kentucky is a wonderful organization; and without their support, charity, and wealth of knowledge, we really don't know how we could have made it.