Before she was born, toddler Evelyn Hagberg of Cedar Hill was diagnosed with a life-threatening kidney problem and given a 1 percent chance of survival.
The 21-month-old defied the odds, though, after receiving experimental treatments while she was still in the womb.
“Evie” was diagnosed in utero with Stage 5 Multi-cystic Dysplastic Kidney Disease, and in an effort to save their daughter’s life, her parents, Celeste and Randy Hagberg, traveled to Cincinnati, where Evie received the experimental amnio-infusions while she was still in her mother’s womb.
Evie was born in September 2018 with no functioning kidneys and soon will need a kidney transplant.
The Children’s Organ Transplant Association, a national nonprofit organization, is raising funds to help cover transplant-related expenses for the Hagberg family, as well as the donor’s family. According to COTA, a life-saving transplant often exceeds $800,000.
Local volunteers are working with COTA on the fundraisers for Evie, with a goal of raising $65,000.
An online auction is currently being held through a Facebook page called Evelyn’s Journey. The auction ends Friday (June 19).
Celeste, 31, said she appreciates COTA’s efforts to help her daughter and the entire family.
“I heard of them (COTA) on Facebook groups from other people’s fundraising,” she said. “I reached out to them through their website personally.”
After numerous surgeries, seizures, infections and dialysis treatments, Evie was 9 months old when she was able to leave the hospital and go home. She takes a lot of medicine, eats special formula through a feeding tube and receives multiple therapies and other ongoing care.
The Hagbergs also take Evie to Cardinal Glennon Children’s Hospital in St. Louis up to five days a week for treatments to maintain her health.
“We live about 45 minutes from the hospital,” Celeste said. “On dialysis day, she has to sit in a crib there for five hours and sit in the car to get home. She has to be fed right away when we get home, so I follow her around holding her feeding pack for an hour so she can walk around and not sit.”
Despite all those challenges, Evie is a happy toddler who can walk, run, laugh and talk. She enjoys playing outside and dancing. She also likes to tease her father, Randy, 35, with the remote, Celeste said on the fundraising website.
Once Evie gains weight, grows and has a bladder evaluation and surgery, she will be ready to receive her kidney transplant.
COTA is helping the Hagberg family prepare for the financial burden by organizing fundraisers and accepting donations.
“With her weight projectory, in maybe six months she will be eligible,” Celeste said. ”So that is why we are trying to get the fundraising going now to try to be prepared and not have any setbacks on our end.”
COTA is organizing other fundraisers – a Scentsy fundraiser, a candle fundraiser and an in-person auction. The Scentsy fundraiser is scheduled for July 12, and the other fundraiser dates will be announced on the organization’s fundraising page for Evie at cota.org/campaigns/COTAforEvelynsJourney.
“The support is wonderful,” Celeste said. “We can’t do this without our family and our friends. It’s just not possible. It’s hard to raise an average kid and all of the support is very welcomed.”