"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."
Peggy Padden is the mother of three boys. She teaches elementary school, loves playing tennis, bike riding, running, and reading. She's the typical American mom. But something happened along the way that changed who Peggy Padden is forever.
In 2003, when he was 21 and a junior in college in Montana, Peggy's son, 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." This gave Peggy hope - that Jake could be on his way to recovery.
While in Seattle, the family 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 the correct diagnosis came - both Jake and Spencer actually 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."
Fanconi Aenemia is a rare condition with about 31 babies born each year with the inherited disease. Many people with FA develop Acute Myelogenous Leukemia or MDS. Though it is seen primarily as a blood disease, it affects all the systems of the body and increases the risk of cancers of the head and neck as well as gynecological and gastrointestinal cancers. Bone marrow transplant cures the FA patient of blood disorders and the risk of blood cancers, but does not decrease the risk of the solid tumors development.
As part of the FA Research Fund, Peggy assists in fund raising efforts and bone marrow drives. Progress is being made but more needs to be made. Bone marrow transplant is currently the only treatment for FA. Peggy participated this year as a consumer peer reviewer for the Bone Marrow Failure Research Program and brought her story, Jake's story, to the panel members. As they reviewed the potential applications for funding, the scientists on the panel that Peggy sat on would have a connection with someone affected by the disease. The urgency, the need for cures for these rare diseases of Bone Marrow Failure can never be felt more than at that moment when stories and life experiences are shared. Peggy was happy to do something, provide a vehicle for all of the families dealing with Bone Marrow Failure in order to have a voice at the table.
"...I am happy to do something that could benefit so many others," Peggy said.
Now, Peggy is thankful that Spencer, who is now 28, is stable and living a happy life with a wonderful girlfriend, many friends, and working as a counselor. He has regular CBCs, bone marrow biopsies and exams for head and neck cancer. Like Jake, he doesn't complain and lives life.
Last updated Wednesday, January 27, 2016