We’d like to introduce you to Rylie Evans, the inspiration behind the 2015 Rocky Mountain Care Foundation Art Drive.
Rylie is the 3-year-old daughter of our Executive Director, Brandie. At six-months-old Rylie was diagnosed with a genetic disorder called Neurofibromatosis-Type 1. Neurofibromatosis, or NF as it is commonly referred to, has been classified into three distinct types; NF1, NF2 and Schwannomatosis. Each of these types of NF is caused by a different gene, located on a different chromosome. NF1 is the most common neurological disorder caused by a single gene; occurring in one in every 3,000 children born. Currently, NF affects more than 2 million people worldwide. Thus, making NF more prevalent than Cystic Fibrosis, Duchenne Muscular Dystrophy, and Huntington’s Disease combined. Although most cases of NF1 are mild to moderate, NF1 can lead to disfigurement, blindness, skeletal abnormalities, dermal, brain, and spinal tumors, loss of limbs, malignancies, and learning disabilities.
Last year, at just 2-years-old Rylie began an intensive 12-month chemotherapy protocol for Bi-Lateral Optic Nerve Gliomas, brain tumors associated with Neurofibromatosis. Gliomas are tumors that grow in various parts of the brain, which can affect one or both of the optic nerves that carry visual information to the brain from each eye. Optic gliomas are rare, slow-growing, noncancerous tumors and most often occur in children, usually before age 20. After spending the last 15-months in and out of the hospital, the Evans family wanted to find a way to give back to the hospital who gave their little girl a fighting chance.
Like Rylie, the kids At Primary Children’s spend long hours in the hospital- it can feel draining and lonely. It is a sterile environment- there are no parks to enjoy, no swimming pools to splash in… While other children are out shopping for new school supplies, others are sitting in a hospital bed receiving life saving treatments. With kids, they do not necessarily have the words to express how they are feeling but they certain can draw about it. Art gives them that outlet; markers, paints, and stickers can make a gray day turn into a much brighter experience.
We here at the Rocky Mountain Care Foundation feel it is important to fill those long days with a little bit of fun! Join us in donating to the first ever RMCF Art Drive! Your donations will help brings smiles to the faces of hundred of kids, just like Rylie.
Let’s stock Primary Children’s Hospital full of color! Donations for the RMCF Art drive will be accepted until the end of August. We are looking to collect:
- Coloring Books
- Washable Markers
- Paints and Paint Brushes
- Dot Paints
- Fun Printed Duct Tape
- Fuzzy Posters
- Colored Felt
- Pipe Cleaners
- Elmer’s Glue
To learn more about the Art Drive and other Rocky Mountain Care Foundation programs visit our website at www.rockymountaincarefoundation.org or call our Programs Coordinator at 801-397-4163.
For more information on Neurofibromatosis, visit the Children’s Tumor Foundation at www.ctf.org.
For more information about Primary Children’s Hospital, visit www.intermountainhealthcare.org