ALSF Fund: Ryan’s Have Guitar; Will Travel Fund

Declan

Ryan just had that smile that made you feel special. He could make you laugh until you cried and make you think in any debate. He was a writer and a musician, teaching himself to play the guitar when he was young. Above all, Ryan was a strong believer in God with compassion for others that motivated him in all his endeavors. His older brother Jason told his pastor that he didn’t have to exaggerate. He said, “There wasn’t a mean bone in his body—that’s just the way he lived.”

Ryan’s children’s book, You’ll Be All Right, Buddy, written following his transplant, was published and distributed by Blue Cross and Blue Shield in 1999. Later, Ryan wrote several articles for Coping Magazine and was a regular contributor to CURE online magazine. This Is Remission , Ryan’s memoir that can be found on Amazon, received the Silver IBPA Award in 2020 for the audible version containing one of his songs. He wrote and recorded “Where Hope Lives,” a song commissioned by the American Cancer Society, and performed it as their featured artist during their annual fundraising event.

Among his many accomplishments in his short 45 years is his black belt in traditional Jui Jitsu. He later taught others in a self-defense class. Ryan was a fighter focused on surviving and always filled with hope. When he was let go from his job, he built an eBay business selling hats, vintage ashtrays and lighters, and items found at estate sales. He made more income from his own business than from the job where he had been employed.

During this time as he collected rejection notices for jobs and insurance applications, Ryan acquired sponsors for his “Hear the Heart” tour. And, in 2010, he traveled throughout the South and Southeast, performing his music for pediatric patients and their families at Ronald McDonald Houses, clinics, and hospitals. His song “Survivors Survive” was re-released on World Cancer Day and heard by survivors across the globe. Other songs have been used in PSAs and Relay for Life events. One of the last songs he wrote and recorded—“Scars”—was a collaboration with two billboard artists, friends who recognized his unique talent and amazing heart for others. His producer and good friend, Jeff Tomei, described the songs Ryan wrote and recorded as “on fire.” Today, you can find Ryan’s music on all major platforms.

I can remember when Ryan was first diagnosed with Hodgkins lymphoma. He was six years old and had been admitted to Egleston Children’s Hospital for surgery, tests, and treatment. But, one day as we were walking down the hospital corridor, he took my hand as we walked past a room where another child was fighting this disease and whispered to me, “Shhh… Mom, we have to be quiet. That boy is having a hard time.” Later, when Ryan had finished treatment and the “Make a Wish” Foundation asked him what he’d like to have to celebrate his remission, he didn’t ask just for himself but for his brother too. That was just how Ryan lived his life—looking out for others. Generosity was just in his nature. He told me many times that if he ever made a lot of money, he would help those who needed it most. I’ve been truly blessed to be the mother of two generous and kind-hearted sons.

Remembering his time as a pediatric cancer patient, Ryan understood the importance of having something to look forward to following a procedure or treatment. So, in 2019, Ryan launched Bamba Box LLC, a gift box company serving others with a tough diagnosis. Bamba Box has shipped and delivered hundreds of boxes to children at the Ronald McDonald Houses, Wolfson Children’s Hospital, Nemours Kids Health, UF Health, V for Victory, Carol’s Light Organization, others serving foster kids, and requests from across the country.

Ryan defeated Hodgkins lymphoma at 6, 9, 11, and 21. Later in life, he dealt with the late-term effects of treatment, which impacted him in many ways, but most especially his heart. We know personally that a cancer diagnosis for a child can be devastating for a family financially. Although health insurance may cover doctor and hospital bills, there are numerous out-of-pocket expenses that families must cover, and among those is the major expense of travel.

In 1983, when Ryan was first diagnosed at six years old, we had to travel a hundred miles from our home to Emory Pediatric Clinic and Egleston Children’s Hospital in Atlanta for treatment. We were grateful for the Ronald McDonald House in Atlanta, where we stayed many times when he was a child, and for the Winn Dixie Hope Lodge, where we stayed while he went through his transplant at 21.

Later in his life, Ryan had to travel again to see doctors at the Cleveland Clinic in Ohio, Emory Hospital and Clinic in Atlanta, and others for the late-term effects of treatment. At these times, we couldn’t stay at a Ronald McDonald House because he was over 18 and wasn’t undergoing treatment for cancer, and we couldn’t stay at a Hope Lodge because he was not a cancer patient. However, the health issues associated with his treatment from childhood to young adulthood required us to travel, and the expenses were beyond our means as neither of us were able to work for several years, living on charge cards and the funds cashed in from Ryan’s 401K.

In 2017, Ryan sold his guitar to purchase airline tickets for a doctor’s appointment at the Cleveland Clinic. When I asked where his guitar was, he told me what he’d done, and of course, I told him I wished he had let me know because I would have gotten the tickets for him. He responded, “Mom, don’t worry about that guitar. I’ll get a better one someday.” And, I was blessed to be with him the day he did.

However, no one should have to sell their guitar, or anything else, to travel for a doctor’s appointment or treatment. Ryan would be pleased to know that a fund for families to travel for treatment has been set up in his honor—Ryan’s “Have Guitar; Will Travel” Fund. Thank you, Alex’s Lemonade Stand!

Fundraisers with recent donations

Event NameCampaignLocationMembersMilesAmount
CommunityThe Million Mile 2024Chicago, IL4387$207

Total: $207.00
Total Members: 4
Total Miles: 387.22