A LETTER FROM LISA JOY

This little cutie is my nephew Ray.

Ray is seven years old. He loves Legos, his dog, his brothers, cuddles, and his favorite apex predators: lions.

Over a year ago he was diagnosed with an extremely rare genetic mutation called XLP2 (1 in 5 million) which commonly leads to HLH (hemophagocytic lymphohistiocytosis). He had been stable on steroids until recently but those steroids are becoming less effective.

Ray has been very strong—going to the hospital every week for a variety of treatments. But there is only one cure for his condition: a marrow or blood stem cell transplant.

The great news is—if we find a matching donor—his disease can be 100% cured. With it, Ray will live a long and normal life. He will get back to being able to play with his brothers, to being the mischievous, loving, and goofy soul he is. He will get to grow up.

But we need to find a matching donor.

My family and I (including my children) have all been tested to see if we are a match. Unfortunately, we are not.  

The difficulty in our search is compounded because Ray is multiracial and ethnicity plays a role in finding a matching donor. He has Chinese/British/Italian heritage. All too often biracial or multiracial people have a hard time finding matches for their marrow/cell types because there are fewer of us in the world. I’m hoping our friends and community can gather around and give to each other and to Ray, the biggest gift one can offer. The gift of life. 

There has been so much sadness and loss in this world recently.  But there are simple things we can do to put meaningful amounts of goodness and light into the world.

Getting tested to see if you are a match is literally as simple as registering online and getting a cheek swab. This can be done from your home free of cost if you are between 18-44 years old. This simple act can save a person’s life—someone’s child, parent or sibling—possibly someone suffering from leukemia, lymphoma, or a condition like Ray’s. If you are a match, the doctor will recommend the appropriate type of donation—80 percent of the time you donate blood stem cells in a process that resembles a plasma donation. But children most often need a marrow transplant. This requires a surgical procedure performed under anesthesia but you recover from it fully, and your body naturally replenishes your stem cells.

So how can you help?

• Get Typed! Please go to Be the Match to get a free, at-home cheek swab kit. 

• Spread the Word! Help us get the word out. We are hoping to type 100k+ potential new donors of all ethnic backgrounds. The more we type, the more lives we can save!

• Donate! Please consider donating to support XLP2 Research under Dr. Rebecca Marsh at the Cincinnati Children’s Hospital, as well as Be The Match’s ongoing efforts to connect patients to the life-saving marrow transplants they need.