Opinion: Get typed to save a life 

Lisa Joy is the aunt to seven-year-old Ray and the advocate behind Roar4Ray. Lisa details that,” [Ray] loves Legos, his dog, his brothers, cuddles, and his favorite apex predators: lions.” Unfortunately, he suffers from XLP2, which is a genetic mutation that effects one in five million people.

On the Roar4Ray homepage, Lisa asked Ray what they should say in the video. Ray enthusiastically replied that they should roar and they did. A lion’s roar is how they communicate to their pride or their family. The lion’s roar is loud and proud, spreading the message to their pride. The roar is magnificent, when a lion roars it carries as far as five miles. The message is clearly sent to all the lion’s pride in the vicinity. What happens if a member of the pride does not hear the message because they are just beyond the lion’s roar to them? Both Ray and his aunt, Lisa, are roaring to communicate the message to get typed to save little Ray’s life. Even though we may not be related by blood, we are all members of the human family. Ray is calling out to us and we need to do what we can to answer his roar. Not many people may know about Ray’s life-or-death situation, so taking up the mantle to roar for Ray is a way to help Ray. In essence, we must roar for Ray. 

Please stay with me in this next part. I know that reading biology may cause some eyes to glaze over — I have experienced this myself — but it is necessary to fully understand what the sweet little boy is fighting against. Suffering from XLP2 means that Ray’s XIAP gene is mutated. According to Cincinnati Children’s Hospital, the XIAP gene makes the XIAP protein, which is required to “regulate the immune system.” There are several treatments for XLP2, also known as XIAP Deficiency. Ray’s XLP2 has been treated with steroids successfully up until recently. The effectiveness of the steroids is lessening. The urgency to find a blood stem cell or marrow transplant donor is evermore present for seven-year-old Ray. However, members of Ray’s family are not a match thus are unable to help him. 

The mountain Ray is facing in finding a match is even steeper because he is multiracial. When matching a donor to a recipient, ethnicity is a factor. A person’s ethnic background significantly affects the likelihood of being able to find a match. There is a 60% chance if one is American Indian or an Alaska Native, a 79% chance if one is white, a 48% chance if one is Hispanic or Latino, a 29% chance if one is Black or African American.

During the COVID-19 pandemic, many people likely felt the desire to find ways to help. Millions have died from the awful coronavirus, getting typed today is a way to save a life — to be the cure for a person. Getting typed increases a person’s chances of living. Living! After the year we all have experienced, let’s better our world with the gift of life. The goal of Roar4Ray is to have 100,000+ people typed. If we are able to, we should get typed and save lives. 

The world as a whole has endured massive agony for well over a year. The coronavirus has plagued the world as it ravages populations, but not just populations— people. The number of cases in the world, in the United States, in Utah have tallied up to so many that it may become a statistic. However, that COVID-19 statistic is comprised of the ailment of masses of individuals. Just because the ailment is universal does not mean that the individuals’ sufferings are universal as well. Yet, somehow we are able to connect with each other on a global, national and local scale. The human race was not meant to endure life in isolation. Cache County has totaled 19,789 cases thus far in the pandemic and 18,811 have recovered from the disease. According to the Bear River Health Department, there are 819 people hospitalized with COVID-19 fighting to survive and 61 people have died after contracting the disease. All of these people are not simply cases, they are people just like you and me. These “cases” are real people who have gone through life and experienced the common struggles and great joys that all humans experience: love, loss, laughter, tears, anger, fear, happiness. Cache County as a community has been greatly impacted by COVID-19. Thankfully we are slowly moving forward. Most people recover from having coronavirus, but the people that need you to get typed may not recover without it. We can be the reason these people live. Young Ray never asked to have the genetic mutation he was born with, but tragically it is his lot right now. Ray’s lot could change though if enough people get typed — especially minorities. He could be cured. Ray could live a long life and experience all the happiness that comes with life. 

The process is quick and simple. If you are between the age of 18 and 44, which would likely be yes if you are reading this piece, the cheek swab kit is sent to you for free. 

Go to roar4ray.org and click the gold box that says “Get Typed Today.” The link takes you directly to the registration page on Be The Match (Be The Match is a donor registry for the United States.) Now on the Be The Match site, click the blue bubble that says “Join The Registry” and fill out the information required to see if you are eligible to donate. If you are eligible then you continue to fill out the information until you are registered. You will be sent a cheek swab kit. When you receive the kit the process takes 10 seconds and you mail it back. The elapsed time to get matched may take months or years, but being typed and in the registry increases patients’ chances of surviving/living. 

The website, roar4ray.org, also provides a registration link for Be The Match in Chinese as well as links for international registries. Please share and spread the news about Ray and the desperate need to get typed. Earlier in the article, I mentioned that Ray is multiracial, specifically, his ancestry is Italian, Chinese, and British. If you share ancestry or ethnic background that is similar to Ray’s, then I implore you to get typed. The truly amazing detail about the #Roar4Ray movement is that Ray’s aunt is advocating for her nephew and all the other patients who need to find a match. If you do not share Ray’s ancestry I still implore you to get typed. You could save another child and give them the gift of life. For Ray’s sake and for all those who need to find a blood stem cell or bone marrow transplant match please register.