Diagnosed with a rare sarcoma when he was a toddler, Honored Kid Alan passed away five years ago. With his chubby-cheeked grin and bright personality, the 2014 St. Baldrick’s Ambassador has inspired all of us — and as his mom writes in this blog, Alan’s impact continues to be felt in a big, brilliant way. Read on to learn how…
Dr. Nino Rainusso meets with Alan’s family, plus Hilly the bear, a stuffed panda purchased in Washington D.C. to represent Alan’s lost opportunities.
Four years ago, we established a Hero Fund with the St. Baldrick’s Foundation to raise money for sarcoma research in Alan’s memory. Last July we were thrilled to share that the fundraising we had done through Alan’s Sarcoma Research Fund had given us the opportunity to name a grant.
Dr. Nino Rainusso of Baylor College of Medicine at Texas Children’s Hospital would be named the Alan’s Sarcoma Research Fund St. Baldrick’s Scholar for his work in identifying and examining the most difficult-to-treat cancer cells from patients at Texas Children’s.
2014 was a memorable year for St. Baldrick’s, with our volunteers raising over $4 million more than last year and funding a total of $27.2 million in research grants! As the year comes to a close, our 2014 Ambassadors reflect on the past year and how much YOU — the people who make the magic happen — mean to them.
Ambassador Alan’s favorite holiday was Halloween because he loved trick-or-treating and exploring the neighborhood. For his last Halloween, Alan was confined to a wheelchair and couldn’t take part in the traditional neighborhood celebration, so his family did something extra special. His mom, Judy, shares these photos and memories.These photos were taken at Morgan’s Wonderland on October 31, 2012. Morgan’s Wonderland has a Halloween event called “More Delightful Than Frightful” and it was one of Alan’s most favorite places.
Ambassador Alan’s mom, Judy, shares why this time of year is particularly difficult — and why it’s fueling her passion to fight for more childhood cancer research funding.
Photo by S.L. Smith Photography.
Judy, right, and one of the event organizers.
My conclusion was that the way to boost your fundraising is to reach beyond your constituency, beyond the people who have a vested interest in fighting childhood cancer. So, to mark the first anniversary of Alan’s passing, two groups of friends held Bunco events to raise money for Alan’s Hero Fund. This would be our first event since the announcement that Alan was one of the five St. Baldrick’s Ambassadors for 2014, and we would be unveiling the banner with his picture. It would also be our first event for the Hero Fund in 2014 and a good start to a new fundraising year.
The Sanders family at a St. Baldrick’s event in San Antonio on March 8.
Of course I was happy to, and as I introduced myself to some of the families I didn’t know, I really began to feel the purpose of why we had agreed to have Alan serve as one of the five 2014 Ambassadors for St. Baldrick’s.
Of course we wanted to share Alan’s story to raise awareness and money for childhood cancer research. Keeping Alan’s story out there allows us to keep him in our lives on a regular basis. But we also wanted to represent all the other children and their families.
One year ago today, childhood cancer claimed Ambassador Alan’s life. His parents, Harold and Judy, reflect on his journey and what this day means to them.
Alan was diagnosed with a rare sarcoma in his hip at 17 months old.
Maybe we are special. But if we are, it is because you — our friends, our family, our community — have made us that way.
Dealing with childhood cancer has sometimes been described as facing the dragon. The thing is, though, it is rarely possible to take on the dragon alone. Usually, you want an army at your side. They’re there to fight with you, to help you up when you fall, to take up the fight when you need to rest. And what we have seen in our army of supporters, we have also seen when we look in the mirror. We know that if you had to, you would rise to the occasion as we had to, because we saw it in how you rose to help us.
They called him Mr. Cheeks for the frequent, easy smiles that stretched across his face. Alan was diagnosed with a rare sarcoma in his hip at 17 months old, but for the five years he graced this earth, Alan was pure joy. He was such an active, engaged child that it was hard to keep him occupied during long hospital stays. “Alan was unstoppable,” his mom says. He learned to walk three times in his short life: as a toddler, as his hip recovered from the tumor damage, and again after having his hip removed.
Harold and Judy Sanders, with their son, Kevin, started a Hero Fund in honor of Alan (affectionately known as “Mister Cheeks”) who passed away from childhood cancer at the age of 5. On September 22, 2013, the Sanders family invited their friends to join them in launching Alan’s Hero Fund at a rocket launch fundraiser. Judy recounts the day with photographs by Julie Kelley.
We were so happy to be able to establish Alan’s Hero Fund this summer as a way to commemorate his life and continue his fight. Though we had participated in a couple of head-shaving events since we lost Alan in January, we wanted to do something to mark the creation of this fund, something that was more personal to our family and to Alan’s life.
One thing we often did as a family, and often with friends, was launch model rockets. Alan enjoyed the opportunities to wander the open fields and because he loved numbers so much, he always looked forward to the countdown to each launch. A model rocket launch event was a perfect choice for launching this Hero Fund.