Doctors said 4-year-old Adalynn Joy Sooter would only live a few more months after they found a massive tumor in her brain. That was on Nov. 12, 2016.
Now — more than 18 months later — the Rogers, Arkansas, girl has shocked medical officials with her survival. But the girl’s parents, Matt and Chandra Sooter, say they know her days are numbered.
“The fact that she’s survived over 18 months now is purely incredible. Her doctors have grown to love her and have been amazed by how well she has done,” Matt tells PEOPLE. “While we’re doing everything we can to change the outcome we don’t expect to win this fight. We haven’t given up, but it seems we are losing the war.”
The family’s ordeal began in October 2016, when the Sooters spent a day at the Silver Dollar City theme park in Missouri. There, Matt’s mother noticed that Adalynn — who the family calls “Addy” — was walking “funny.” Matt, who first shared his story with Love What Matters, says he noticed a “hitch” in Addy’s step as well.
“We were confused, but we thought it could be because of the growth spurt she had just gone through,” he tells PEOPLE. “As it got worse, we became more and more concerned.”
Throughout the weeks that followed, Matt and Chandra noticed that Addy was having even more trouble walking, often stumbling and falling. He says the little girl even had difficulty holding her eating utensils.
Worried, they took the then-2-year-old to the hospital where doctors found a tumor growing on the girl’s brain stem. She was diagnosed with diffuse intrinsic pontine glioma (DPIG). Doctors said the little girl would likely live for only a few more months.
“It crushed us,” Matt says of the moments he and Chandra first got the news. “To instantly feel so helpless is something no one should ever have to feel.”
Over the next few weeks, Addy endured dozens of radiation treatments and, much to the family’s delight, the tumor shrank to nearly half its size.
“We were relieved and we hoped and prayed she would be one of the rare ones whose tumor would stabilize,” Matt says. “But we knew the odds were that it would come back.”
And it did. By July 2017, doctors noticed the tumor had begun to grow again. They told the devastated parents that there was nothing more they could do for the little girl.
So, Matt and Chandra turned to an experimental treatment offered in Mexico.
For nearly a year, they’ve taken the little girl to Monterrey for treatment and Matt says a single trip can last up to 12 days. Travel and medical expenses have cost the family more than $200,000 — but Matt says he and Chandra would do anything for their now 4-year-old daughter.
“Addy is very much a 4-year-old little girl. I love her kind heart, her spunk, and her tenacity,” Matt gushes of his daughter.
He says that the treatment in Mexico has not been effective in recent weeks and that Addy’s health is visibly failing.
“She’s lost a lot of her balance and needs assistance walking most of the time. The right side of her face is also paralyzed due to the tumor pinching the nerves that control that side of her body,” he tells PEOPLE.
He says, “While we don’t look forward to a future without our little girl, we don’t fear it.”