Harley Franklin Fetterman

Harley Franklin Fetterman, 18, of Austin, Texas passed away Sunday, July 31, 2016 at Texas Children's Hospital in Houston from complications following a 13 year battle with cancer. Harley graduated from Bowie High School in June 2016 while attempting a bone marrow transplant.

Harley is survived by his parents, James Kevin Fetterman and M Elisabeth Freeborn, his paternal grandparents, Jerry and Cissie Fetterman, of Three Rivers, Texas, his dog, Bentley, his cat, Waldo the Healing Kitty, aunts and uncles, Sandy (Leda) Freeborn, Kathy (Jimmy) Strause, Lynn Freeborn, Kerry (Debbie) Fetterman, Kelly (Tony) Dilworth, and many cousins. He was preceded in death by his maternal grandparents, Sidney and Jean Freeborn of Orange Grove, Texas. Although he was an only child, he had a large and loving extended family.

At 5 years old, Harley was diagnosed with a brain tumor growing from his optic nerve that made him blind. In 2003 through 2009, he had two rounds of chemotherapy to stop the tumor from growing and multiple brain surgeries to remove a cyst around the tumor. In 2013, he was diagnosed with Myelodysplastic Syndrome (MDS) which turned into Leukemia while he was waiting for a bone marrow transplant 2016.

He had many accomplishments for such a young man. He attended Camp Discovery almost every year since he was 6 years old. During those camps, he won the Director's Award in 2010 and Camper of the Year in 2014. His favorite activity at camp was the Jell-O Wars.

When he was 7, Harley made a goal to see all 50 states by the time he was 10. He finished this goal at Four Points (Arizona, New Mexico, Nevada, Colorado) 1 week before his 11th birthday.

Harley was an avid Braille reader and won 1st place at the Central Texas Regional Braille Challenge 7 out of 8 years he participated. He qualified to participate in the National Braille Challenge in Los Angeles, CA 9 of 12 years. He won 3rd place in 2013 and 2nd place in 2015 at the national level.

Harley loved music. He learned to play the piano when he was 6. At Bailey Middle School, he joined the band and learned to play the French horn and to read Braille music. Like his Dad, he enjoyed playing music on his iPhone and MP3 player. But his favorite instrument was the guitar which he started learning to play during his Sophomore year in High School. Even as he continued to master the guitar, he also learned how to play other instruments such as the ukulele, guitarlele, mandolin, accordion, and saw.

Harley raised money for American Cancer Society (Relay for Life), Garrett's Kidstrong, Make-A-Wish, Dell Children's Hospital and the Miracle Network by speaking at events and on radiothons since he was 9 years old. Phrases he's known for are "Chick's dig scars." And "Thank you for helping me Kick Cancer's Ass."

Harley was a member of the St. Baldrick's Foundation's Knights of the Bald table, having shaved his head more than 7 years to raise money for childhood cancer research.

Harley was an ardent advocate for himself and blind people everywhere. At the age of 10, he testified before the Texas House and Senate education committees concerning a law to require VI Teachers to be certified. In more recent years he testified before the Texas Sunset committee concerning keeping Division of Blind Services (DBS) separated from other Department of Assistive and Rehabilitative Services (DARS) divisions.

He was a devoted member of the National Federation of the Blind (NFB). He became one of the youngest board Members for Texas Association of Blind Students (TABS). He attended numerous NFB programs including Washington Seminar ( where he met congressman Pete Sessions), Stem2U, STEM EQ, and STEP.

In High School, he competed as a member of the James Bowie High School of Austin's Debate and Number Sense teams. This year, he graduated on the Distinguished Plan in the top 16% of his class.

His goals for the future were to attend Texas A&M University for his first degree in business management and that he would eventually get his doctorate in nano-technology. He had plans to develop a 2 ½ D refreshable screen that would enable the display of Braille as well as tactile pictures. His hopes were that the screen would appeal to sighted people as well as the blind so that his market would be big enough to sell it at a reasonable price.

Memorial service will be held on Saturday, August 13 at 2:00 PM at the Weed-Corley-Fish Lakeway Funeral Home (411 RR 620 S., Lakeway, TX).

In lieu of flowers, memorial contributions may be made to any of the following:

Braille Institute - brailleinstitute.org

VisionWorks - Camp Discovery - visionworkscamps.org

St. Baldricks Foundation - stbaldricks.org

National Federation of the Blind - nfb.org

Make a Wish - wish.org