IDAHO CITY, Boise — Rays for Rare is a nonprofit based in Meridian that focuses on families with medically fragile children in the Treasure Valley. The nonprofit was founded when Megan Schomer of Eagle saw a need for more community support, after the death of her own 4-year-son with complex medical needs in 2016.
“At the 18-week ultrasound, we went in for gender, and we found out something was wrong with his brain, but we didn't know what it was,” she said.
Corwyn Schomer was born with a devastating brain malformation in 2012. His life was tough from the very beginning.
“He had seizures, that was the biggest struggle. Terrible seizures,” Schomer said. “The doctor out of Seattle Children's Hospital didn't think he would make it to two, so he told us just go live every day to the fullest, and that's what we did. He never walked or talked. But, we gave him so many experiences as a family. He was so loved.”
Corwyn passed away at the age of four in 2016. It was a devastating and painful loss for Schomer, her husband Corey, and Corwyn’s big brother. Schomer, who had been in real estate for 15 years, said she wanted to do something to honor her son's life.
“I wanted to help families that are where we were,” she said. “We were up at the hospital, in the ICU unit and there is a lot of support there. The healthcare system is amazing, all the staff there, you are very supported, and that's where the charities go. They bring the toys and the blankets and that's where all the charitable work happens, but when you are at home, especially on hospice, there's nothing. You are on your own, you are very isolated and we wanted to support families in that situation.”
In the midst of her grief, Schomer did just that. In early 2017, Corwyn's Cause was registered as an official nonprofit.
“It been very therapeutic for me,” she said. “You can only know how to help these people if you've been there.”
In 2019, Corwyn's Cause was growing and serving hundreds of families. Schomer decided to change the name of the organization to Rays for Rare, representing close to 3000 families in our area with children with rare and complex medical conditions.
“I really wanted it to represent all the families we serve. They are all rare, they are all special and they are all remarkable,” she explained. “We really wanted something that represented all of them, and Rays for Rare rare was it.”
Their mission statement is to bring uplifting support to medically fragile children, and their families. Rays for Rare offers in-home support, but also offers advocacy for families who encounter issues with the health care system.
“We do house cleaning, lawn care, snow removal, meals, and we also do community events to bring these families together,” Schomer said. “It really doesn't matter what the diagnosis for each child is, it's a similar journey, and the families need each other.”
Which is a journey that Renee Perran knows all too well after she lost her son Connor to a rare disease last year.
“Connor was a normal adventurous little boy until he was about 4-years-old,” Perran said. “He started to have seizures, and about a year after that he was diagnosed with Batten disease CLN1, which is a rapidly progressive brain disease that is always fatal. We didn't know how long we would have with him.”
Rays for Rare provided key services and support, so the Perran family could spend every moment they could with their young son.
“We got our house cleaned once a month, we got our lawn mowed weekly, they offered us snow removal,” she said.
Perran explained that Rays for Rare has been there every step of the way. She decided to start volunteering for the nonprofit after Connor’s death. She said helping other families is now helping to heal her heart.
“It's okay to not be okay,” Perran told KTVB. “You go on, you find a way to go on and honor your children.”
That's exactly what founder Megan Schomer has dedicated her life to. Even during the COVID-19 pandemic, Schomer and her volunteers have been serving families.
During the Idaho stay-at-home order, they brought families much-needed supplies, to protect their at-risk children. That service has continued through the months of the pandemic.
“Our goal is to continue to grow, and ideally we'd like to become a national organization. There’s nothing like it,” Schomer said.
Schomer is a true hero to her son, Corwyn, and the families that Rays for Rare serves.
“Everything I have done in my life has prepared me for this.”
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