Emmy-nominated writer, producer and director Lisa Joy, Ray's aunt, has launched a national awareness campaign to increase the diversity on the Be The Match Registry.
Those who enjoy the HBO sci-fi drama series Westworld may know Lisa Joy as a dynamic screenwriter, director and producer as well as the creative force behind her feature directorial debut of Reminiscence starring Hugh Jackman and Rebecca Ferguson, for Warner Bros. Pictures in August.
But to her 7-year-old nephew, Lisa is the fun auntie who goofs around with him and his siblings, makes him laugh, and sometimes, roar.
When Lisa learned Ray would need a bone marrow transplant to cure him of a rare genetic mutation, she was quick to get tested to see if she could be his donor. Unfortunately, she learned that she is not a match, and there are currently no ideal matches for him on the Be The Match Registry.
Lisa is a proud Asian American who is half-Chinese. Her nephew, who she lovingly calls Ray because he’s her "ray of sunshine,” shares her ethnicity. Asian patients have just a 46% chance of finding a matching donor on the registry, and multiracial individuals have an even more difficult time finding a match.
To help diversify the registry and raise awareness of rare genetic diseases, Lisa did what she does best – she jumped into creative mode to share the story of her nephew. She created #Roar4Ray, an international campaign asking the world to step up and become a hero to patients in need of a blood stem cell or marrow donation.
Here’s more about Ray, in Lisa’s words:
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 is expected to lead to HLH (hemophagocytic lymphohistiocytosis). He had been stable on steroids but recently those steroids became 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 the right 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 my community of Asians and multiracial friends 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 this year for everyone. But there are simple things we can do to put meaningful amounts of goodness and light into the world.
Ray is the strongest, coolest, bravest kid I know — but he’s been fighting really hard for a really long time. Please help us keep up the fight for Ray and others like him. Please get typed today. #Roar4Ray
All the best,
Lisa Joy
How Can You Help?
- Join the Be The Match Registry! Order a free, at-home cheek swab kit and be willing to donate for any patient in need of a transplant: Join today.
- Let’s see you swab & hear you roar! Swab your cheek, spread the word and create your own #Roar4Ray video! We are hoping to type 100k+ new donors. The more we share, the more lives we can save!
- Donate! If you’ve already been typed (or aren’t eligible to be a marrow donor) you can still help by donating: Donate now.
