There is something magic about Rylie Rahall. She is one of those kids society calls an “old soul” because her kindness, understanding and empathy are way beyond her years. She’s the type of child who excitedly plans each valentine for her classmates and teachers, even though the project will be extremely taxing. As she explained to her mother: "Each heart will be perfect for each person in my class because everyone will get their own special heart that was made just for them and nobody will have the same one. We are all different, Mom, and that makes us all special in our own way."
Rylie’s parents, Tim and Erica Rahall, can tell you the worst day of their lives: November 30, 2011. This was the day they learned their baby had Ataxia-telangiectasia and nothing would ever be the same.
Ataxia-telangiectasia or A-T is a horrific, rare genetic disease combining the worst symptoms of muscular dystrophy, cerebral palsy, cystic fibrosis, immune deficiencies and cancer. It is a degenerative condition attacking the nervous system, brain and the body’s immune system in early childhood. Children with A-T are predisposed to fatal cancers and are usually confined to wheelchairs by the age of 10. They often do not survive their teens.
In the devastation of this diagnosis, the Rahalls have dedicated themselves to fighting the clock on this pernicious disease. Their largest fundraiser, the Rylie’s Angels A-T Golf Tournament, is now in its 6th year. Last year, with the help of numerous volunteers, it earned an unprecedented $95,000 for research and this year they are hoping to break 6 figures.
As a result of these efforts, scientists are developing chemical compounds to assist in combating A-T, finding ways to lessen the side effects, creating A-T cell models and learning how the protein works in brain cells. In addition, this research has broad reaching consequences beyond A-T. Scientists are also learning more about neurological diseases, cancer, HIV/AIDS, Alzheimer’s and immune diseases providing hope for the Rahall family and humankind in our mutual fight against disease.
For information on the golf tournament, sponsorship opportunities or donations please go to: https://www.atcp.org/RahallGolf
Note: Spinster’s Guide™ is a proud supporter of Rylie’s Angels. She holds a huge place in all our hearts.