Why We Run

Juvenile Xanthogranuloma (JXG), usually limited to the skin, is the most common form of non-Langerhans-cell Histiocytosis. The incident rate is 1 in a million in children and only 4-10% of those are systemic. Systemic JXG is when JXG occurs in one of more internal organs, as was in Ty's case. We were lucky. For this reason, spreading awareness is so important to us. If we can save one life or can help one family get their diagnosis before being told "we have waited as long as we possibly can," it will be worth everything. Please read Ty's story below to learn more about JXG and why finding a cure is our ultimate goal. 

At eight months, our son Ty loved to dance and listen to music. He was fascinated by wheels; he would stare down at the wheels on a stroller instead of enjoying the scenery during walks. Ty gave the BEST hugs. Ty also had a large tumor growing on his lung. The mass grew to be so big that he couldn’t breathe on his own and it blocked a major artery.

For a month we lived at the hospital while doctors tried to diagnose Ty. He went through multiple surgeries and procedures, including a blood transfusion, heart surgery, chest surgery, and biopsies of his bone marrow, his spine, and the mass. We were told after the mass biopsy that the tissue looked like juvenile xanthogranuloma (JXG), but that JXG only appears on the skin, not on internal organs, so they didn't know what he had. For two weeks Ty needed to be kept sedated and on a breathing machine. Imagine not being able to hold your baby for two weeks.

On November 29, 2013, the day after Ty's first Thanksgiving, the doctors told us that they had waited as long as they possibly could and they had to treat Ty with something even though they risked making him worse. Later that day, Ty was diagnosed with mediastinal JXG. Yes, the same thing we were originally told didn't grow on internal organs. Ty began chemotherapy. After 12 weeks of weekly chemotherapy and steroids, the mass shrank to almost nothing. Ty continued chemo for a year. So far, the JXG remains stable.

Now, Ty is 10 years old and like other kids, he loves video games, riding his bike and fishing. But unlike other kids, Ty also celebrates milestones like being chemo-free for almost nine years.