Harley’s Wallet
Our Story
Harley was diagnosed with a brain tumor in his optic nerve when he was almost 5 years old. He received two sets of chemotherapy, one for 14 months, the other for 9 months. Although the tumor was no longer growing, he had many brain surgeries to deal with a cyst associated with the tumor that was causing problems. When he was 11, he had a surgery that removed most of the tumor. This took care of the problems with the cysts, but severed the optic nerve to his right eye. When he was 15, he was diagnosed with Myelodysplastic Syndrome (MDS) which was most likely caused by one of his chemotherapies. It is only curable with a bone marrow transplant. In February 2016, the Spring of his Senior Year at James Bowie High School in Austin, the MDS became full fledged AML Leukemia. We decided to do a haploid bone marrow transplant using Harley’s mom’s cells. After 5 months of trying to make the transplant successful, Harley died at Texas Children’s Hospital. Harley took every challenge with courage and grace. He learned braille and became a champion at the Central Texas Regional Braille Challenge. He was a finalist at the National Braille Challenge for 9 of 12 years he was eligible to go. He placed 3rd in 2013 and 2nd in 2015. Despite the issues with Leukemia, he qualified for the National Braille Challenge in 2016, but could not attend. Harley felt strongly about giving back to organizations that helped him while he was sick. He gave speeches at Relays for Life which benefits the American Cancer Society. He appeared on radiothons for Make-A-Wish and the Miracle Network. Every year, he shaved his head with his dad to raise money for the St. Baldrick’s foundation which funds childhood cancer research. He was very active in the National Federation of the Blind (NFB) and NFB of TX. He advocated for the blind by testifying at the Texas legislature for bills concerning blind services and
Harley was good at mathematics and learned the Nemeth code. He was very enthusiastic about the technology that gives blind people the ability to function and compete in today’s society. He was asked several times to demonstrate this technology for new teachers of visual impairment at Texas School for the Blind and Visually Impaired (TSBVI). He learned Braille music and knew how to play several instruments. His favorite was the guitar. Often, when he was in the hospital, he could be heard playing his guitar for his family and his fellow patients. Mission
Our mission is to continue the work that Harley did to advocate for children in need and their families. Our focus will be on organizations that help children with cancer and their families and children living with blindness and their families, but we will consider other organizations on a case by case basis. We are not a political organization and have no plans support any organization that targets a particular race, religion, or political affiliation.
