Rylie was diagnosed with a genetic disorder called Ataxia-Telangiectasia (A-T) on November 30, 2011, at the age of two. It is progressive and effects the control Rylie has over her muscles. She will progressively get worse and will likely be in a wheelchair around age 10; she is 9.5 years old today. Having this cruel disorder also means she is at a much higher risk to get cancer at a young age and have immune system deficiencies. The average life expectancy for someone with A-T is the late teens to early 20’s. A-T is extremely rare: there are only about 500-600 confirmed cases in the United States.
Rylie is so precious, so innocent, and so loved. Rylie is a beautiful and loving little girl. She brings so much joy to the lives of others and every moment spent with her a blessing. Rylie touches so many people in a positive way with her smile and compassion. Rylie is very intelligent and loves to play with her little sister and brother, dance, swim, learn at school (Top of the World Elementary) with her friends, and help around the house (especially by baking cookies!). Life without her is unimaginable. She deserves to live life to the fullest and have every opportunity to do so!
Rylie has been fitted for an electric wheelchair and will be relying on it for mobility as her disease quickly progresses. Private insurance only covers a percentage of the total cost. In order for Rylie to use the chair throughout her home, modifications to doors, hallways, bathrooms, and bedrooms will be needed to ensure it will be safe and easy for her to navigate. Rylie loves to be outdoors and around her peers therefore the electric wheelchair will need to be transported to various places in the community. This can only happen if modifications are made to the family vehicle. As Rylie gets older and her disease progresses, life will become more challenging and things that she used to do will no longer possible or extremely difficult. By supporting Rylie, you can help these new changes that she is facing become easier to accept and adapt to.
Family and friends of Rylie Rahall are raising money for the nonprofit Help Hope Live to fund uninsured medical expenses associated with Catastrophic Illness.
Rylie has chosen to fundraise for Help Hope Live in part because Help Hope Live assures fiscal accountability of funds raised and tax deductibility for contributors. Contributors can be sure donations will be used to pay or reimburse medical and related expenses. To make a tax-deductible donation to this fundraising campaign, click on the Give button.
For more information, please contact Help Hope Live at 800.642.8399.
Thank you for your support!
