Help support the cure for Remi

I am Haley Bright, I am raising funds for my daughter, Remi, who has a very rare disability called CTNNB1. CTNNB1 is similar to Cerebral Palsy, as it causes a wide range of defects including mobility, cognition, spinal issues, as well as gastrointestinal issues. We are now needing to raise money for intensive care, traveling for the annual conference for her disability, and therapies to improve Remi’s quality of life. The disorder specifically causes Remi to have a multitude of symptoms, including low tone in her body affecting her ability to sit, stand, and walk like a regular toddler. Remi is almost 3 and can only sit up, has minimal language, and is need of additional help to gain a higher quality of life. Over the last few months, she has began self harming to display how upset she is with her need to advance.

Our next steps is to take her to Boston to be considered for the cure in human clinical trials this summer, in the interim we will be doing intensive therapies, these therapies range at about 3,000 a session cycle (2 weeks) we are trying to get Remi into the next cycle, sign ups take place in September. Any money we raise would be use for accessibility for Remi, covering any items to optimize her quality of life, as well as transportation to neighboring cities, where the therapies take place. The other children with Remi’s specific variant are walking with the help of an extended therapy program.

Her father and I, have spent so much time wondering, if we had access to more resources, had more support, how much different her quality of life would be. I am unable to work in order to do Remi’s care, so it’s important we try to get walking as soon as we can, to improve not only her life, but the lives of our family as a unit.