Sisterhood and Survival: The Hope of Bone Marrow Registries
It’s always a great feeling when we get to bring good news to this blog. There are many challenges that those with histiocytic disorders may face, but there are also many actions that we, as the Association and as individuals, can take to help mitigate the challenges. This week, we want to highlight the opportunities bone marrow and stem cell registries give us and show the good they can do in our community.
The Need for a Transplant
Katie Amdal is a histio warrior from Queen Creek, Arizona. She was a healthy child until 2020 when she was diagnosed with Hemophagocytic Lymphohistiocytosis (HLH). Her older sister Lauren had previously been diagnosed with a separate rare disease. Yet, after Katie’s diagnosis, the Amdals confirmed that both sisters share the same PRF1 mutation that can cause HLH. Her original diagnosis was then changed to HLH. Inadvertently, the family was familiar with some of the signs, symptoms, and challenges of HLH.
Still, nothing could have prepared them for the life-threatening experience Katie was about to head into. The HLH was destroying Katie’s Kidneys. She was in desperate need of a bone marrow transplant.
On the other side of the country, in Memphis, Tennessee, Olivia Kink turned 18 and signed up to the DMKS bone marrow and stem cell registry. She became a nursing student and went on with her life. Then one day, in March of 2021, the call came in. Olivia was a match for someone in need.
The Hope from Another Sister
That someone was Katie. Katie had previously had a bone marrow match from Olivia’s twin sister, Sophie, sometime earlier. Unfortunately, there weren’t enough stem cells to transplant to Katie and Sophie wasn’t able to donate a second time so soon. When Olivia came up as an equally perfect match, she was ready to give whatever she could to save Katie’s life.
It was a fulfilling experience for both parties. Katie had the opportunity to live her life normally again without the risk of kidney failure and Olivia was able to share part of herself to save someone else.
A year and a half out from the donation, Katie and Olivia finally had the chance to meet in person a few weeks ago at a conference. Katie gifted Olivia a matching heart necklace. Now they both share stem cells, and a heart, around their necks. It was such a beautiful moment that it was captured by Fox 13 in Memphis here.
Your Chance to be Someone’s Hope
Katie and Olivia received the gift of hope, and both have experienced love and rescue through sisterhood. There is so much beauty in that. Although Katie and Lauren share the PRF1 gene, which lead to Katie’s HLH there was a separate shared gene Olivia and Sophie had. Those genes gave her a second chance at life.
If you would like to experience the hope that comes through giving someone a second chance at life, through something that your body shares with theirs, please sign-up with any one of the registries listed below.
The opportunity to save a life is rarely as simple as a swab, but many advancements in testing and transplants have made this a safe option for both the donors and recipients. It’s a simple tool we have, to defeat histiocytosis and many other diseases through registry matches and transplants. Katie’s mother Vicky says it best.
“I would just encourage everyone that is able to please join the registry. Saving a life is such an amazing gift.” -Vicky Amdal