JACKSON, MO (KFVS) - In 2017, seven-year-old Lilly Berry from Jackson, Missouri lost her life to arteriovenous malformation, a disease so rare it only affects one percent of people.
Lilly's family has received an outpouring of support and now they want to give back to the community that helped them through tough times.
"She was the youngest of three and was the most full of life girl you would ever meet everywhere we went people stopped to talk to us about her beautiful red hair," said Stella Berry, Lilly's mother. "Definitely had everyone in our family tied around her little finger."
Lilly Berry went to bed in June 2017 with a headache, when her mom woke up to Lilly having a seizure. After being rushed to Cardinal Glennon Children's Hospital, Lilly's doctor told her parents to pray for a miracle.
"We found out it was an AVM there was too much damage her brain had been without oxygen for too long. So on June 7, we decided to remove care and not keep her on machines," said Stella Berry.
Just a little over a year later, her family is starting the Lilly Berry Foundation
"We want to educate and bring awareness to AVM so maybe we can prevent this from happening to another family," said Stella Berry.
They also want to have a positive impact on the lives of children in the area by supporting local schools, local churches, youth softball organizations and bereaved parents while we bring education and awareness to AVM.
In June 2018, the city of Jackson dedicated field number three to Lilly, so it's fitting that's where the first event will take place.
"Our very first event is a youth all-star softball tournament it will be on July 28 and 29," said Stella Berry. "She was, her daddy coached her from t-ball and then coaches pitch last year for a little while during the season she absolutely loved it. She loved being on the field with her friends and getting to make new friends she didn't meet a stranger."
Hosting a softball tournament is no easy feat, so they are asking for concession donations, advertisers to support the event and teams to play in it.
The money made at the tournament will go to the Lilly Berry Foundation to support children and their families.
"We received such an outpouring of support from our community and the surrounding community we just feel it's only the right thing to do to start a foundation to give back to the communities to help in anyway that we can to honor her memory," said Stella Berry.