In 2014, Lisa and Chad Borodychuk founded the Olivia Kay Foundation in honor of their daughter, Olivia, who was diagnosed with Alexander disease, a rare and painful disorder of the nervous system, at the age of 2.
In 2010, Olivia lost all ability to move and function on her own. Her loving parents struggled to alleviate Olivia’s joint and back discomfort from the incurable disease, but nothing seemed to work – that is until Lisa placed a hand-sewn pillow underneath her daughter’s back.
“Pillows became a big part of our lives,” Lisa tells PEOPLE. “Since we started the foundation, we’ve made 4,250 pillows and counting.”
The foundation raises funds to find a cure for Alexander disease among others and to buy money for pillow fabric and stuffing. The pillows are then donated to hospitals so kids can relax in often uncomfortable electric beds. In May 2016, PEOPLE featured the Borodychuks as a “Heroes Among Us” family.
Sadly, on April 28, Lisa and Chad lost their “princess” Olivia— but the parents say her positive impact on the world will live on forever.
“She didn’t speak a word, but she was able to bring people together in such an incredible way,” Chad tells PEOPLE. “She taught us so many wonderful things, like how to look beyond anger and find the good out of life’s struggles. She was a wonderful, selfless human who inspired everyone she met.”
On May 3, the family hosted a celebration of life for Olivia, where they released 100 purple balloons into the sky.
“I just felt more peaceful and more joyful knowing where she is at, that she is not suffering anymore,” says Lisa. “There is no pain anymore.”
“It was so symbolic to the fact that she is in a better place, she is in heaven,” adds Chad. “I have never seen balloons fly so high, I feel that way about my daughter — she flew high and now she has a very special place in heaven.”
WATCH: Meet the Couple Who Is Making Pillows to Comfort Their Daughter and Other Children Suffering From Alexander Disease
Lisa and Chad plan to keep Olivia’s memory alive through their foundation.
“Our hope this year in talking with our board is to raise more funds to help get wheelchair accessible ramps to families,” says Chad. “And of course to keep the pillow project going.”
In order to ensure that the pillows are created in a clean and sanitary environment (a necessity for a gift to a sick child), the couple does not accept material donations, only monetary contributions through the Olivia Kay website.
“At Olivia’s service, we had families come up to us saying, ‘We’ve received your pillows!’ ” says Lisa. “It brought us so much joy and comfort to hear that, we hope others take note and extend the kindness.
“It’s the little things, like pillows, that can make the biggest difference.”