Heartbreaking photo of boy comforting his dying four-year-old sister in her last moments battling rare terminal brain tumor

• Addy Sooter was diagnosed with incurable brain cancer in November 2016
• She underwent 33 bouts of radiation but the cancerous cells returned
• Last year, the family went to Mexico for an experimental chemotherapy treatment, but the tumor instead continued to grow rapidly
• Her father shared a photo on Facebook of his six-year-old son Jackson comforting Addy in the hospital before she passed away on June 3

A father has shared a heartbreaking photo of his son comforting his four-year-old daughter before she passed away from cancer.

Adalynn ‘Addy’ Sooter, from Rodgers, Arkansas, was diagnosed with an inoperable brain tumor known as Diffuse Intrinsic Pontine Glioma (DIPG) in November 2016 after her parents noticed she was having some difficulty walking.

She underwent 33 bouts of radiation that initially killed the cancerous cells, but they returned. 

The family then tried their luck with an experimental chemotherapy treatment in Mexico, spending more than $200,000 for transportation and medical expenses in Monterrey – but the tumor continued to spread.

In the photo, Sooter’s son, six-year-old Jackson, is seen stroking his sister’s head and giving her his other hand to hold.

‘A little boy should not have to say goodbye to his partner in crime, his playmate, his best friend, his little sister,’ Sooter wrote on Facebook. ‘This isn’t how it’s supposed to be. But this is the broken world we live in.’

Matt Sooter, from Rodgers, Arkansas, posted a photo on Facebook of his six-year-old Jackson comforting his daughter, four-year-old Addy, before she passed away from cancer on June 3

Addy (left and right) was diagnosed with an inoperable brain tumor known as Diffuse Intrinsic Pontine Glioma (DIPG) in November 2016 after her parents noticed she was having some difficulty walking

DIPG is a very rare and highly aggressive form of cancer with tumors in the brain. Over time, the tumor affects heartbeat, breathing, swallowing, eyesight and balance. Addy (left and right) was given just months to live

The tumor, called DIPG, is a very rare and highly aggressive form of cancer typically found in children between ages five to nine.

Addy, who was diagnosed at just two years old, is one of the youngest cases doctors have seen. 

Only between 200 and 300 children in the US are diagnosed each year.

This type of tumor is located at the base of the brain and the top of the spine, but it is unknown what causes them.

The tumors pressure on the area of the brain called the pons, which are responsible for a number of critical bodily functions, such as breathing, sleeping and blood pressure. 

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Over time, the tumor affects heartbeat, breathing, swallowing, eyesight and balance.

Some of the first symptoms of the tumor are problems with eye movement, facial weakness, difficulty walking, strange limb movements and problems with balance.

Most people with this type of cancer only live for nine months following the first diagnosis, and some don’t even make it long enough to receive radiation treatment.

Addy’s parents, Matt and Chandra, first realized their daughter was walking ‘funny’ at the Silver Dollar City theme park in Missouri. They eventually took her to the doctor just after Halloween 2016.

‘At first one of her legs was kind of strangely swinging, so they thought it might be an orthopedic issue,’ Addy’s grandmother, Ann Sooter, told Daily Mail Online in a previous interview. 

Addy (pictured with her dad, Matt) immediately began radiation and received 33 rounds of treatment over the course of six weeks in an attempt to shrink the tumor. It initially shrunk the cancerous cells but they soon returned

Through the Make-A-Wish Foundation, Addy was given a trip to Disney World complete with a Frozen-themed party with her favorite princesses: Anna and Elsa

The family took one last chance and headed to the 0-19 Clinic in Monterrey, Mexico, in July, for an experimental chemotherapy treatment, spending $200,000 on medical expenses and transportation. Pictured: Addy, left and right

The family was sent to Arkansas Children’s Hospital in Little Rock where they received the diagnosis of DIPG and Addy was given just months to live.

‘Once doctors found out it was DIPG, they basically said: “Enjoy your time, she is going to die”,’ Ann explained. 

Addy was immediately began radiation and received 33 rounds of treatment over the course of six weeks in an attempt to shrink the tumor.

Initially, the family received good news – that the tumor had shrunk. But they were warned by doctors that it would likely return.

‘Her doctors told us that the tumor would come back aggressively, and that once that happened there would be nothing we could do about it,’ Ann said.

Because of the aggressive tumor and seemingly hopeless diagnosis, the family worked to make the most out of their time with Addy.

Through the Make-A-Wish Foundation, Addy was given a trip to Disney World complete with a Frozen-themed party. 

The family also visited Colorado so Addy could see snow and play in the mountains, something she is unable to do in her native Arkansas.  

However, after noticing that Addy was struggling to walk again, she was sent to the doctor for another MRI.

‘The results weren’t good. We found out that the original part of the tumor had died, which would have been promising, but now there are new parts of the tumor aggressively growing around the original,’ Ann explained. 

The treatment, which involves a shunt to drain fluid from the brain before receiving the chemotherapy through two catheters, worked at first. Pictured: Addy and her brother Jackson

However, in May, the Sooter family learned that Addy’s (pictured) tumor continued to spread, leaving them out of options

A celebration of life service was held for Addy over the weekend in Arkansas and her family asked for donations to various charities in lieu of flowers. Pictured: Addy with her parents, Matt and Chandra, and her brother Jackson

The family took one last chance and headed to the 0-19 Clinic in Monterrey, Mexico, in July, for an experimental treatment spending $200,000 for both medical expenses and transportation, the family told PEOPLE magazine.

The treatment, which involves a shunt to drain fluid from the brain before receiving the chemotherapy through two catheters, worked at first.

However, in May, the Sooter family learned that Addy’s tumor continued to spread, according to Yahoo.

Out of options, the Sooter family returned to the US and, on June 1, Addy was admitted to Circle of Life Hospice care in Springdale, Arkansas.

Matt Sooter posted the heartbreaking update to the Hope for Addy Joy Facebook page, where he had been documenting his daughter’s fight against cancer.

Uploaded on June 2, a post that accompanied the photo explained that Addy’s symptoms had progressed rapidly. She was no longer able to eat or swallow without difficulty.  

‘Pray for Jackson,’ Sooter ended the caption of the photo. ‘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.’

A celebration of life service was held for Addy over the weekend in Arkansas. Her family said in lieu of flowers, please consider making a donation to the Michael Mosier Defeat DIPG Foundation, Arkansas Children’s Hospital, or Ronald McDonald House Charities of Arkansas.

HOW TO SPOT A DIPG TUMOR

DIPG (Diffuse Intrinsic Pontine Gliom) is a malignant brain tumor that grows quickly and is likely to spread.

DIPGs are glial tumors, meaning they arise from the brain’s glial tissue – tissue made up of cells that help support and protect the brain’s neurons

They are found in a lower part of the brain stem called the pons.

The pons is responsible for a number of critical bodily functions, such as breathing, sleeping and blood pressure.

DIPGs account for 10 percent of all childhood central nervous system tumors. Between 200 and 300 children in the US are diagnosed each year, usually between the ages of five and nine. 

The symptoms of DIPG usually develop very rapidly prior to diagnosis, reflecting the fast growth of these tumors. 

The most common symptoms include: 

• Problems with balance and walking
• Problems with the eyes (including double vision, drooping eyelids, uncontrolled eye movements, blurred vision)
• Problems with chewing and swallowing
• Nausea and vomiting
• Morning headaches or a headache that gets better after the child vomits
• Facial weakness or drooping (usually one side) 

Surgery to remove the tumor isn’t always an option due to the dangers of operating on critical areas of the brain. Radiotherapy tends to be the standard form of treatment. 

The prognosis for DIPGs remains very poor, although a small percentage of patients survive this disease. 

Only 10 percent of children with DIPG survive for two years following their diagnosis, and less than one percent survive for five years. 

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