Two years ago, Addy Joy Sooter’s grandma noticed a little “hitch” in her granddaughter’s step.
Initially, Addy’s mom and dad didn’t think anything of the minor change in the 2-year-old’s walk, until several visits to the doctor confirmed the worst — Addy had a deadly tumor on her brain stem.
Later that year, the toddler was officially diagnosed with Diffuse Intrinsic Pontine Glioma, or what is known as DIPG.
According to defeatdipg.org, DIPG is “a brain tumor found in a part of the brain stem called the pons. The pons controls essential bodily functions such as heartbeat, breathing, swallowing, eye movement, eyesight, and balance.”
The aggressive tumor is known to affect exclusively children, and it interferes with almost all everyday activities, including the ability to move, talk, eat, and drink.
While the survival rate for DIPG patients “very low,” the Sooters still held high hopes for a cure for their baby girl.
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In her first three months of treatment, Addy seemed to be responding well to the countless rounds of radiation. However, at the six-month mark, the treatment ceased working and the tumor grew larger.
Medical professionals told Addy’s parents that there was nothing more they could do and that they should take her home to “make memories.”
However, the Sooters weren’t about to give up on fighting for their daughter’s life that easily.
They made the tough decision to take the toddler to Mexico to participate in an “experimental treatment.”
Starting in the summer of 2017, the Sooters went to Mexico every three to six weeks to get treatment for Addy… but sadly in May of this year, they received the heartwrenching news that her tumor was back and had spread down her whole spine.
There was truly nothing more that could be done, other than to say goodbye to their sweet little girl.
In an emotional post, Addy’s dad, Matt, shared an image of his son Jackson saying goodbye to his little sister, along with a caption that declared the goodness of God amidst this tragedy:
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“A little boy should not have to say goodbye to his partner in crime, his play mate, his best friend, his little sister. This isn’t how it’s supposed to be. But this is the broken world we live in. Addy’s symptoms have progressed rapidly over the past day and a half. Yesterday she woke up as her spunky playful self. While we still see short instances of our girl she can no longer eat or swallow without difficulty and she’s sleeping most of the time now and we’ve admitted her into inpatient care. Most likely she doesn’t have much time left. For our family and close friends if you feel you need to tell her goodbye we recommend you contact us and do so soon. Pray for Jackson. He doesn’t want to leave her side and we won’t make him. Pray for us. That we have the right words and can make the necessary arrangements in time.
Always remember: God is in this situation, He’s up to something, and He’s up to something GOOD.”
On June 3, Addy took her final breath, surrounded by her family.
While they are devastated by her death, the Sooters remain confident that God will work all things out for good for those who love Him, as promised in Romans 8:28.
According to Matt, though they “miss their sissy,” they are glad she’s no longer in pain and is instead resting in the arms of Jesus.
Addy donated her brain, spine, and tumors to scientific research “in hopes of saving future children from a similar fate.”
In lieu of flowers, the Sooters requested that people “please consider making a donation to the Michael Mosier Defeat DIPG Foundation, Arkansas Children’s Hospital, or Ronald McDonald House Charities of Arkansas.”
