I honestly have never known anyone who loved life like my son Jake. He was interested in almost everything and truly lived life with passion.
In 2003, when he was 21 and a junior in college in Montana, Jake decided to go to the doctor for a blood test. He had rarely been sick, but had been getting sick frequently and was taking a while to get better. The doctor's office called when the results came back and told him to go to the hospital immediately. He might have leukemia.
Test after test, and a long two weeks in the hospital, Jake's blood samples were sent to the Mayo Clinic, and he was diagnosed with Myelodysplastic Syndrome (MDS).
We were told he needed a bone marrow transplant immediately. Our other two sons, Conor, 18 at the time and Spencer, 15, were tested to see if they were a match. It was recommended Jake go to Seattle for the transplant.
While in Seattle, we found out that Spencer was a complete match. For two weeks Jake was prepared for transplant. Spencer was given a routine blood test a couple days before the procedure - the results were stunning. Spencer probably had MDS as well.
It's the only time in my life I literally have been speechless. I couldn't speak. Now, not only did Spencer have the same life threatening disease, but we no longer had a match for Jake. They told us they wouldn't be able to do the transplant and we went home to Portland.
A few days later we got a different diagnosis. Both Jake and Spencer had Fanconi Anemia (FA).
After two months in Portland, where Jake suffered a horrible infection and the doctors were waiting to find a non-related match for him, Dave Frohnmayer, the co-founder of the Fanconi Anemia Research Fund, told us to stop waiting and take Jake to Minneapolis immediately for a transplant. Dave had personal experience; he had two children pass away from FA and another affected by it.
We went to Minneapolis, and Jake had an unrelated transplant there. It was a long, grueling, hellish experience. Jake truly fought heroically and I never once heard him complain. He passed away at day 100, and I've missed him every single day since.
Since Jake passed away, I have gotten over a thousand people on the bone marrow registry and raised over a million dollars for FA research. Research is our hope and it has become my passion in life. For Spencer, for all the other children and adults affected,and in memory of Jake. Spencer's health continues to be stable and for that, we could not be happier or more grateful.
This was my 3rd year participating as a consumer peer reviewer for the Bone Marrow Failure Research Program. I am very interested in bone marrow failure research and am happy to do something that could benefit not only those with FA, but those with other bone marrow failure diseases as well.
Last updated Friday, May 24, 2019