We are trying to get funding for muscle therapy program and specialized tub for my four year old daughter. Isis Snow was born with a brain injury due to fetal maternal hemorrhage. She lost almost all her blood requiring multiple transfusions after birth. When this happens its a mystery to doctors, no n known cause. They call them "ghost babies" but our nurses nicknamed her Snow White, which is how we got her middle name. For this reason she now has a form of CP which makes her muscle extremely tight and spastic. She also has a seizure disorder which we have pretty good control of, but the medicine slows develppmemt. At 2 years old after many doctors visits trying to figure out why shes so sick and after going DKA we found that she also has an autoimmune form of diabetes, type 1. This makes her insulin dependant requiring 6 shots a day to keep her alive.
We have put all of our needs on the back burner, rightfully so she deserves the world, but still cant do enough. I tried to keep working cutting back hours as her needs kept increasing. 100percent of my day is dedicated to all of her needs. My job fired me last year while I was in the hosptial with her an hour away and couldnt get to work. Thankfully they hired me back a month later letting me work only a couple hours a day, a couple days a week. I go in at night after I have given her all of her shots/therapies for the day. All of this hard work is paying off though because she is at the healthiest and most stable point in her life right now.
The muscle retraining therapy has been recommended as the next step to get her more mobile and comfortable. Once she can learn how to control her muscles the right way she will be in less pain and so much happier. Even with a doctors prescription insurance wont cover it and I have multiple insurance carriers for her. The ABM therapy will be between 4500 -5000$. Along with that we need a specialized tub that we can use throughout the day to relax her. She cannot use a pool because the cool water makes her muscles contract. She needs warm water with room to stretch. This will also be in the 4000$ range. Combined these things will change her life.
She needs so many different things but we believe this to be the most important at this time. Once we got her diabetes in control and she started gaining weight she has started to make great progress. She can see and focus now, she tries playing and walking in walker and she is just such a happy goof when she isnt uncomfortable. The doctors are all amazed at how well she is adapting and overcoming. They are confident she will be super successful with the program.
I would love to document her progress and keep u all up to date on the stages of the therapy. We have been doing this alone, with my familys help of course, for years. Financially/medically she just needs too many things. They are so overpriced and need help. Hopefully we can even help others with her story. She deserves all the opportunity there is and we are so thankful of any help. Thank for for taking an interest in her story.
