At one-and-a-half years old Alexander Kavanaugh—a.k.a. Alexander The Mighty—has captured the hearts of hundreds of thousands of people. And he’s making a difference for many that he and his family will never meet by inspiring people across the country to join the Be The Match Registry®.
The little boy has had major medical problem his entire life. But in March 2022, doctors gave his parents devastating news. The little boy with a joyous smile and love of music has an extremely rare, terminal genetic disease called Hoyeraal Hreidarsson Syndrome (HHS). It’s so rare that less than 50 people have ever been diagnosed with HHS.
The disease impacts the brain and other organs and causes developmental and cognitive issues. It also causes bone marrow failure and immune deficiency syndrome.
“The condition is very scary. All of his blood counts are low at all times and makes his immune system basically nonexistent. Any virus or infection is potentially fatal to him,” his mom, Kuylea, shared.
While there is no cure for HHS, a blood stem cell transplant (also known as a bone marrow transplant) will remove bone marrow failure from the equation.
“Alexander’s life expectancy with Hoyeraal Hreidarsson Syndrome is to not live past early childhood and without a bone marrow transplant, his time may come sooner than we’d ever imagine,” Kuylea explained on the social media pages set up to share Alexander’s journey.
Finding Alexander’s bone marrow donor
Immediately after Alexander’s diagnosis, his doctors at Children’s Hospital Los Angeles began searching for a donor. With no matches in his family, they turned to the Be The Match Registry to search for an unrelated donor.
And after 217 days of waiting, hoping and praying, Alexander’s family finally got some good news. A bone marrow donor said yes.
“There are no words… After 217 days of waiting, we finally have found a donor for Alexander!!! We don’t know who it is because the registry requires anonymity for the first year but whoever you are, you’re a miracle,” Kuylea shared on social media.
While Alexander found his match, his family continues to raise awareness and encourage more people to join the Be The Match Registry.
In posts on Alexander’s social media pages, his mom said, “Without the superheroes on the registry, as well as those who donate blood + platelets, people like this special baby boy would not make it.”
You can help support patients and families like Alexander. Anyone between 18-40 years old who is in general good health and willing to donate to any patient can sign up to join the registry. You could be a match for a patient who needs a blood stem cell transplant. Visit my.bethematch.org/SaveAlexander to sign up.