Last week, on June 3, 2018, the world lost a beautiful spark of life. After a three-year battle with brain cancer, Addy Joy Sooter, a 4-year-old girl, passed away— leaving a powerful photo in her wake.
The photo shows the girl hours before her death. She is laying in a hospital bed, clutching the arm of her big brother, Jackson, as he comforts her in her final moments.
The heartbreaking photo was shared on the “Hope for Addy Joy” Facebook page by Matt Sooter, Addy’s father. The group had been created to update friends and family about Addy’s condition. The caption reads:
“A little boy should not have to say goodbye to his partner in crime, his playmate, his best friend, his little sister.”
“This isn’t how it’s supposed to be. But this is the broken world we live in.”
In 2015, Addy was diagnosed with diffuse intrinsic pontine glioma (DIPG), a tumor that affects muscles, nerves, heart rate, and breathing.
According to the American Cancer Society, brain and spinal cord tumors are the second most common cancers in children after leukemia. They account for 25% 0f all diagnosed childhood cancer cases. Generally, kids diagnosed with this brain tumor will live for at least another 5 years. However, it all depends on which area of the brain the tumor is located.
In Addy’s case, the tumor was located on a part of her brain stem called the pons. Because the pons controls essential bodily functions like heart rate and breathing, the survival rate of DIPG is less than 1%— making it the deadliest of all pediatric brain tumors.
Addy underwent 33 rounds of chemotherapy in the span of 18 months.
The family was ecstatic when treatments seemed to improve her condition— but sadly, it didn’t last long. Eventually, the tumor started growing again.
Although Addy’s condition continued to worsen, her parents refused to give up hope— even paying more than £150,000 (the equivalent of $200,000 USD) on experimental treatments for their daughter in Mexico.
But the tumor continued to grow.
Throughout it all though, Addy bore a smile— never revealing the struggle she was battling.
By the beginning of June 2018, her parents knew the end was near.
In a post dated June 1st, Addy’s father Matt wrote: “I know it’s been a while since I’ve updated. I’m sorry about that. We’ve spent the past few weeks trying to live it up and have fun. We went to the beach thanks to some dear friends! We’ve spent time playing with family and friends and just enjoying our time together.”
“Over this past week, Addy has lost her mobility and developed quite a bit of pain in her back from the tumor in her spine,” he continued.
“We’ve admitted her to hospice to help deal with the pain and they are helping us keep her comfortable while staying at home.”
“We are still searching for and seeking out options but are also starting to make preparations for the end of this journey.”
From there, Addy’s symptoms rapidly worsened and the family admitted her to in-patient care, where the heartbreaking photo was taken.
“Pray for Jackson,” Matt wrote. “He doesn’t want to leave her side and we won’t make him.”
A few hours later, at 1:03 AM, Addy Joy Sooter passed away.
“She passed from this life to the next just as she had lived,” her father wrote. “Stubbornly, but also peacefully and surrounded by family. This all happened so much faster than we expected but that, in itself, is a blessing because she suffered so little at the end.”
Despite his grief, big brother Jackson told The Washington Post he was glad Addy Joy “was going to be with Jesus.”
RIP Addy Joy Sooter— a tiny angel has gotten her wings.
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