Rylie's Angels
Donation protected
Rylie was diagnosed with a genetic disorder called Ataxia-Telangiectasia (A-T) in November 2011. It was the worst day of our lives. 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. Having this cruel disorder also means she is at a much higher risk (30%) 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.
Rylie is so precious, so innocent, and so loved. Rylie is our world and is a beautiful and loving little girl. She brings so much joy into our lives and we consider every moment with her a blessing. Rylie touches so many people in a positive way with her smile and compassion. Rylie is very intelligent 6-year-old and loves to going to Kindergarten with her friends, riding her therapy horses, playing with her friends, and being the best big sister to Sadie. She has a huge heart that she shows everyone she meets, including animals. Giving hugs to Pluto, Anna and Elsa, and Minnie Mouse is the highlight of Rylie’s trips to Disneyland. We can’t imagine life without her. She deserves a fighting chance and we are her advocates, dedicating our lives to saving our little girl. Soon, she will realize that she is different from her friends and we hope that there will be a cure by then.
A-T is extremely rare: there are only about 500-600 confirmed cases in the United States. The rarity of this orphan disease, unfortunately, puts it at the bottom of the list for federally funded research. There is no motivation for funding by large pharmaceutical companies, as the financial benefit to these companies does not exist. Because A-T is a multi-system disease, scientists believe that A-T research will help more prevalent diseases such as Alzheimer’s, Parkinson’s, AIDS, and cancer.
Since A-T is progressive, Rylie's time is limited to enjoy being physically active. We are getting her involoved in as many acitivites that we can before this terrible disease begins to take away her ablilities. She participates in adaptive sports like: gymnastics, yoga, horseback riding, and swimming.
Rylie has a regular bike but she is too scared to ride it beacause of her axtaxia--it makes her feel like she will fall off and causes her to have a wobbly walk and bump into people and things. Rylie could beenfit from an adaptive bike that its fitted to her and gives her the security for confidence and the ability to ride safely.
Rylie currently uses an adaptive stroller when she is required to walk long distances. She gets faitgued easily and the stroller helps her conserve her enegery. However, the stroller makes her dependent on us. She would greatly benefit from a walker so that she could move freely and rest whenever she wants.
Thank you so much for taking the time to read this. We really appreciate your support and continued thoughts and prayers.
Much Love,
Tim and Erica Rahall
Rylie is so precious, so innocent, and so loved. Rylie is our world and is a beautiful and loving little girl. She brings so much joy into our lives and we consider every moment with her a blessing. Rylie touches so many people in a positive way with her smile and compassion. Rylie is very intelligent 6-year-old and loves to going to Kindergarten with her friends, riding her therapy horses, playing with her friends, and being the best big sister to Sadie. She has a huge heart that she shows everyone she meets, including animals. Giving hugs to Pluto, Anna and Elsa, and Minnie Mouse is the highlight of Rylie’s trips to Disneyland. We can’t imagine life without her. She deserves a fighting chance and we are her advocates, dedicating our lives to saving our little girl. Soon, she will realize that she is different from her friends and we hope that there will be a cure by then.
A-T is extremely rare: there are only about 500-600 confirmed cases in the United States. The rarity of this orphan disease, unfortunately, puts it at the bottom of the list for federally funded research. There is no motivation for funding by large pharmaceutical companies, as the financial benefit to these companies does not exist. Because A-T is a multi-system disease, scientists believe that A-T research will help more prevalent diseases such as Alzheimer’s, Parkinson’s, AIDS, and cancer.
Since A-T is progressive, Rylie's time is limited to enjoy being physically active. We are getting her involoved in as many acitivites that we can before this terrible disease begins to take away her ablilities. She participates in adaptive sports like: gymnastics, yoga, horseback riding, and swimming.
Rylie has a regular bike but she is too scared to ride it beacause of her axtaxia--it makes her feel like she will fall off and causes her to have a wobbly walk and bump into people and things. Rylie could beenfit from an adaptive bike that its fitted to her and gives her the security for confidence and the ability to ride safely.
Rylie currently uses an adaptive stroller when she is required to walk long distances. She gets faitgued easily and the stroller helps her conserve her enegery. However, the stroller makes her dependent on us. She would greatly benefit from a walker so that she could move freely and rest whenever she wants.
Thank you so much for taking the time to read this. We really appreciate your support and continued thoughts and prayers.
Much Love,
Tim and Erica Rahall
Organizer
Erica Rahall
Organizer
Lake Forest, CA
