Every patient and every donor has a unique, special story to share. These are stories of courage and challenge that not only tug at the heart, but show the true impact that donating blood stem cells or marrow has on patients, their families and the communities that support them. Here is a first-hand look from five-year-old transplant recipient alongside his 48-year-old donor.
Shannon Brooks, Brantley’s mother
Brantley was diagnosed with hemophagocytic lymphohistiocytosis, or HLH, at just three months old. My husband, Kyler, and I were still adjusting to being new parents and raising a newborn. Hearing Brantley’s diagnosis was so terrifying and heartbreaking. Kyler and I had no idea what this meant for the future of our little baby. We were shocked, devastated and in denial. We felt powerless. As a parent, your natural instinct is to help your child when they’re sick, and we couldn’t do that. Knowing that there’s nothing you can do is the worst feeling in the world. Kyler and I did our best to be there for one another during these struggles. I cried on his shoulder and he cried on mine. We knew that we would do whatever it took to help him.
Ray of hope
Our doctors told us right away that Brantley would need a bone marrow transplant, but we had no idea what the actual procedure entailed. Brantley had to immediately start high-dose steroids to suppress his immune system and was placed on the transplant list for around 4 to 6 weeks. There were a few potential donors, but ultimately only one worked out — a donor who signed up with DKMS. Hearing that Brantley had a match was the greatest feeling! We knew that once we had a donor set in place that we could move on to the next steps of his treatment. We didn’t know anything about the donor other than that he was a middle-aged man and, without knowing us or our son, he was willing to do what he could to save Brantley’s life. We constantly thought about who the donor was and what he might be like. Before we ever talked to him, we thought of him as a part of our family.
I remember waking up on a Saturday to an email that seemed to answer all of our questions, starting with who the man was who’d saved our son’s life. His name was Don. Kyler and I read through it together and just cried. There are no words to explain the emotions we felt that morning. We read through his email several times throughout that day, trying to let it all sink in. We’ve had the pleasure of meeting Don several times now. A few months after making contact, he and his family flew up to Vermont to visit us. That first time we met, it went as expected. There were a lot of happy tears and hugs. Brantley and Don shared an instant connection — as if they had known each other forever. It was truly amazing to see the two of them side by side. Since then, we have become family. Don surprised us by coming up to Vermont last year, and we recently surprised him in NYC when he was presented with the award for Donor of the Year by DKMS!
You can’t really imagine what it’s going to be like to watch your child fight for his life. All you can do is stand by his side and comfort him as best you know how. But I’ll say this: For any parents facing this terrifying and unknown horizon, to know that there are people out there like Don, who are willing to help someone they’ve never met, whose name they don’t even know, gives you hope. And that makes all the difference.
I registered to become a donor at a drive in NYC in June 2009. I had actually donated blood at the drive, and, as I went to leave, a person from DKMS approached me and asked if I would register as a bone marrow donor. It sounded like a good cause, and the representative mentioned that less than 1 percent of donors were matched with patients due to how difficult the matching process was. I signed up, swabbed and then didn’t think about it again.
Out of the blue
Fast forward three years to 2012 — I was at work, checking my emails and one of the emails had the subject: “Donald, You’re a Match!” The email said I was a match for an infant boy who was in urgent need of a bone marrow transplant with instructions to call DKMS right away. I picked up the phone and called on the spot. The thing I remember the most from the experience is how incredible the coordination was between all of the donor center staff members. From the moment I called that first time, I was always informed via email or phone call what to do next; I always felt like I was in good hands. Even after the donation, I received emails from follow-up coordinators to check on my recovery status and was sent emails with updates about my recipient, who was anonymous at the time. All I knew was that he was a young boy in the fight of his life, and I just hoped my donation could give him the chance he needed.
Starting a dialogue
I thought about him all of the time. DKMS is only able to provide basic information in their recipient updates, and the updates are limited. While I could get a general sense that he was doing well, I wanted to know the details about his recovery, I wanted to know who this little boy was and everything about him and to know that he was going to be ok. In July 2014, I finally received the family’s contact information and learned the name of the little boy whose life was now forever inextricably linked to mine. His name was Brantley. The first thing I did when finding out his name was to look him up on Facebook. It was very emotional for me to see all of the pictures of this incredible, brave little boy, the strength and love of his amazing family and the community that supported them. After I finished reading through every post on the Facebook page, I wrote Brantley’s mom and dad an email — it was an incredible feeling.
Forming a family
I received an email the very next day from Kyler and Shannon, Brantley’s dad and mom. Their reaction was similar to mine — absolute joy to be able to finally connect with one another. Fortunately, I’ve been able to spend time with Brantley and his family several times. I flew up to Vermont to visit Brantley and his family for the first time about three months after we made contact. I’ve since visited Vermont on a separate occasion, and Brantley and his family surprised me recently by flying down to New York during a DKMS award ceremony.
Brantley and his family are now a part of my family — we share this incredible connection for life. I remember hugging him that first time and being brought to tears of happiness that he was ok. Being a bone marrow donor changed my life forever, and, if ever asked, I would do it again in a heartbeat.