Losing a child is a terrible tragedy for any parent. But for this young boy, there’s nothing more tragic than being with his dying sister during her last moments to bid her farewell.
A father whose young daughter died of a tumor in her brain and spinal cord has shared a crushing photo of his son saying goodbye to his sister. Here, one family is grieving after losing their believed Addy, who had been battling cancer for nearly two years. Sadly, she passed away earlier this week surrounded by the people who loved her most— including her older brother Jackson, who refused to leave his sister’s side during her last moments.
In late 2016, Matt and Chandra Sooter found out that their daughter, then two, had an incurable tumor growing on her brain stem, otherwise known as Diffuse Intrinsic Pontine Glioma. Sadly, doctors told the parents their daughter would likely not live more than a few months.
Devastated, the family refused to accept this was the end for their daughter and searched high and low for all types of treatments for their daughter. Finally, they found a treatment center in Mexico that was working on an experimental treatment.
The treatments worked for a few months, and at one point Addy’s tumor had shrunk. But this didn’t last long, and doctors told the Sooters that their daughter’s cancer had spread to her spine. At this point, their best bet was to go home and enjoy their time together.
Addy passed away on June 3, but not before her brother Jackson could say goodbye. According to The Stir, Jackson stayed by his sister’s side all day long, never refusing to give up a moment without her.
“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,” Matt Sooter wrote on Facebook.
Up until Addy’s death, the parents struggled to find the words to explain to Jackson that he was about to lose his little sister. “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,” continued Sooter.
Before her death, the parents were able to make good memories with their daughter, making road trips and going to the beach. However, Addy’s condition meant she couldn’t walk alone for long periods of time, so their adventures were limited.
In a tribute to his daughter, Sooter wrote that his daughter passed away without pain, and surrounded by her family. “She passed from this life to the next just as she had lived: stubbornly but also peacefully, and surrounded by family. She wasn’t in any pain at the end,” he wrote.
Prior to her diagnosis, Addy and her family loved to spend time together and would often go on trips together and spent time with family. While the moments they got to spend together were limited, they will be cherished forever.
“This all happened so much faster than we expected, but that in itself is a blessing because she suffered so little at the end. While this is the only goodbye, for now, we miss our baby girl terribly. Always remember: God is in this situation, He’s up to something, and He’s up to something GOOD,” said Sooter.
Sooter announced that since her death, the family has agreed to donate the tumor in Addy’s brain and spine to a research center in the hopes that scientists will be able to use it to help find a cure. Now, the family is hoping to raise awareness of childhood cancer.
“My hope is that this story would inspire you to take action for those who cannot take action for themselves. Our children are our future and yet they only receive four percent of cancer research funding,” said Sooter, via Love What Matters.
Sooter continued explaining that only about four percent of funding meant to go to cancer research goes towards researching childhood cancer. As a result, he hopes opening up about Addy’s story will allow more of this funding to go to researching childhood cancer.
“Four percent for all of the childhood cancers. And of that four percent, only about four percent of that goes toward research for DIPG patients. The average adult cancer victim loses about 10-15 years of their life to cancer. The average child cancer victim loses around 75 years of life. Our children deserve more,” he said.
The family plan to hold a memorial service for Addy this weekend. “Thank you for being a part of our little girl’s miracle. While this is the only goodbye, for now, we miss our baby girl terribly,” said Sooter, via Love What Matters.