The death of a cherished Ocean Springs child has birthed a home-grown foundation that’s fighting for a cure for the destructive brain tumor that ended her life. “I knew early on that our fight was not going to end when Sophia’s fight ended,” said Angel Myers McIlrath, mother of Sophia Myers and founder of the SoSo Strong Pediatric Brain Tumor Foundation.
One day, Sophia Myers was a vibrant and active 7 year old. Within the blink of an eye, she was fighting for her life against a childhood-robbing illness. Diffuse intrinsic pontine gliomas are highly aggressive and difficult to treat brain tumors. Found at the base of the brain, the tumors quickly interfere with basic bodily functions, such as eating, walking and communicating. DIPGs mostly afflict children ages 4 to 11 years old, and the life expectancy is typically less than a year from diagnosis. Sophia made it nearly eight months.
McIlrath said she has not found the words to describe what it was like for the community to embrace her family the way they did after Sophia’s diagnosis. “There was a worldwide outreach for Sophia, and I got messages from all over the world,” she said. “It is something I will never forget. It is something Josh (Sophia’s father) and I are committed to paying it forward. Both of us, in our individual lives, are committed to serving our community in every way that we can to pay it forward in any way we can.”
September is Childhood Cancer Awareness Month, and McIlrath has a single message.
“Don’t wait for it to be your kid,” she pleaded. “When you go to a football game on Friday night, look around. One in 285 children is diagnosed with cancer. As a community, as a society, we have to do something before it’s your kid. Let’s do something so that it’s never your kid or anybody else’s.” Sophia, who was a talented dancer and loved animals, had many nicknames. She was affectionately called Bug and Baby Bug by her mother, but Sophia’s favorite nickname, Soso, was bestowed upon her by her Mimi.
As Sophia courageously fought her battle in the University of South Alabama Hospital’s ICU, it became apparent that she was “so, so strong.” “Our foundation’s motto is ‘Because all kids should live,’” McIlrath said. “We are all pediatric brain tumors (because) we’ve had others in the area battling pediatric brain tumors that are rare and need to be addressed. We have a local view right now, but we want to make a difference nationwide and worldwide.”
The SoSo Strong Foundation’s mission has four parts: 1) Finding a cure, 2) finding a cause, 3) spreading education and awareness, and 4) providing patient services. “Patient services and finding a cause are what separates us from other organizations such as the Michael Mosier Defeat DIPG Foundation and The Cure Starts Now,” McIlrath said. “Those are incredible organizations, and we support them financially and in any way that we can, but we want to know what is causing this and we want to offer services to patients’ families,” McIlrath said. Most patient services have been for funerals so far.
“There are families who can’t afford a headstone,” she said. “That’s part of what our patient services are right now, but our hope is one day that patient services will just be comfort items until they get cured.”
McIlrath said she desperately wants a cure.
“When we met with some of the best doctors in the entire nation, they said if you can cure DIPG, it will cure so many other cancers (because) it is that complex of a cancer,” she said. “If we can cure it, and it will lead to cures for other types of cancers, what a legacy – not just for Sophia, but for all of these children that I know. All of these children who have died, it has to matter.”
At a minimum, McIlrath wishes for the foundation to help fund research that will help sustain life and improve quality of life for the children affected by DIPG. “Every cent, every volunteer hour, every action helps,” she said. “Don’t not help because you think the problem is so big you can’t do anything about it,” she said. “Don’t not help because you only have $5 to give or you only have two hours to volunteer. Everybody can do something, and we can make a big difference in this disease and all childhood cancers.”
McIlrath said it’s easy to ignore problems that haven’t personally affected you, but childhood cancer should move each heart to action. “When it’s not you, it’s not real,” she said. “On February 20, 2017, I was a working mother of a healthy seven-year-old. I had aspirations for her, and I had aspirations for myself. We were just living life.” On February 21, 2017, McIlrath said, she woke up, ate breakfast, and went to work just like everyone else. “I got Sophia where she needed to go, and I answered the calls and answered the emails and did everything I needed to do, and by 5 o’clock that day, I was told that my daughter was going to die,” she said. “That could be anybody, and that’s why you should care – before it’s you. Because if you care now, maybe you can stop it from happening to your child or another child you love.”
The SoSo Strong Foundation will soon hold a volunteer rally, McIlrath said, hopefully at the Ron Meyers Christmas City gift show in Biloxi. The foundation is also seeking event staffers and event planners. “We have several events planned for next year, including a gala, golf tournament, and some other things,” she said. Those interested in volunteering can send an email to [email protected] or send a Facebook message to the foundation’s page.
Monetary donations to the 501(c)(3) can be mailed to P.O. Box 632, Ocean Springs, MS 39566. Since its inception in May, the foundation has raised $60,000, McIlrath said, but the need calls for millions. “If you ever watch a child suffer with cancer, it will change your DNA,” she said. “It will change everything about you, and you will never be the same, and you will never be quiet about it again.”