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Meet Lilli Rae, a 3-year-old medical warrior

Lilli Rae Graf is her family's "superhero," mother Krista Graf said. SpareKey organization, which helps pay for housing for families with children in medical crises, asked for Lilli to be pictured in their 2017 calendar. Submitted photo1 / 3
After her second round of chemo, Lilli was able to return home for one week in May 2018 when she was 2 years old. Her mother Krista said she "handled chemo like a champ". Submitted photo2 / 3
Dreamworks Animation's movie "Trolls" is one of Lilli's favorites. Bracelets were made in early 2018 to fundraise for Lilli, which include a quote from the movie on one side: "Hey, I'm not giving up today". Submitted photo3 / 3

Little Lilli Rae Graf can't stop smiling.

Her short brunette hair tied up in a pink band at the top of her head bobbles as she laughs with her mom, Krista Graf, while sitting in her stroller.

With her big smile and energetic personality, it would be hard to guess the 3-year-old toddler who just celebrated her birthday has spent much of her short life in the hospital.

"She's something phenomenal. She is our superhero," Krista, Lilli's mom, said with a glimmer in her eye. "She is a warrior like I've never seen."

When Lilli was just a baby in 2016, she was diagnosed with Trisomy 21, or Down syndrome, and an Atrioventricular Canal heart defect which resulted in an open heart surgery. Lilli also experienced many infections, an intestine disease, pneumonia and a collapsed lung in the first five months of life.

Then, in February 2018, Lilli began battling Acute Myeloid Leukemia behind her sunshine-filled smile, undergoing five months filled with five rounds of chemotherapy treatment.

"It's interesting, finding out your child has a diagnosis of Down syndrome so you start to learn to become a part of that community. Then all of a sudden there's the AV canal heart defect, so then you're part of the congenital heart disease community. And then all of a sudden she has Leukemia, so then you're part of a cancer society. It's been a busy three years trying to get back on track and help other organizations and people in these situations," Krista explained.

Currently, Lilli is in remission and receives chemotherapy at home once a day for maintenance. In September 2018, Lilli celebrated being cancer-free and her two-year 'heartiversary' after her heart surgery.

"Our ride's not over yet, we got a good five years before she's in the full clear," Krista said solemnly. "Every day it crosses my mind that my daughter fought cancer and is still fighting. Will she ever be able to be this normal child and not have to worry about if there's going to be a health risk?"

Krista and her husband Douglas, who also have two grown sons, live outside of Ellsworth and have had to keep Lilli sheltered to prevent further health problems due to a weak immune system.

She now finally has the opportunity to begin connecting with other children her age after so many years in the hospital for a multitude of health complications as a baby.

Recently she just started attending preschool for a few hours each day.

Kayleen Jakes, owner of Brush Strokes Paint Party and Art Supply in Ellsworth, is hosting an activity day called "Day to Play for a Cause" for children on March 6 from 12-4 p.m. open-house style. Children can participate for $5 and all proceeds go to Lilli.

"It's nice to finally get to know our community and get to know the people in our town and doing fundraisers like this just touches our hearts," Krista said.

Krista is looking forward to connecting at this local event with parents who have children Lilli's age, so they can set up playdates.

Despite every struggle Lilli has gone through at such a young age, she continues to love life with music, dancing and singing.

Her favorite tunes come from movies she watches, including Dreamworks Animation's Trolls, a musical. The song "Get Back Up Again" from that movie sung by Anna Kendrick is one that drives Lilli's story, with the lyrics "I'm not giving up today" making their way onto bracelets her family made for her.

"She's changing our lives, everyday. Everybody just adores her and she adores them," her mother said.

Rachel Helgeson

Rachel Helgeson

(651) 301-7864
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