The & # 39; lazy eye & # 39; of a boy turned out to be a sign of a terminal brain tumor, his heartbroken family revealed.
Charlie Stephenson, nine, showed no other symptoms and his parents Tony and Soeli suspected he would only need corrective glasses.
But the couple's world crashed in February this year when Charlie was diagnosed with the rare diffuse intrinsic pontine glioma (DIPG).
Doctors have said he has nine to twelve months to live because the tumor cannot operate, leaving Mr. and Mrs. Stephenson empty & # 39; empty & # 39; to feel.
In a few months, Charlie will lose vision, communication, and coordination as the tumor grows and presses on crucial nerves.
The family now hopes to raise £ 125,000 for a treatment that can make Charlie's life a few months longer.
The & # 39; lazy eye & # 39; of nine-year-old Charlie Stephenson turned out to be a sign of a terminal brain tumor when his family was told he only had nine months left to live. Pictured in the hospital showing his left lazy eye
Charlie, who lives in Norfolk, showed no other symptoms and his parents Tony and Soeli Stephenson suspected that he would only need corrective glasses
The world of Mr. and Mrs. Stephenson crashed in February this year, when Charlie was diagnosed with a rare non-operable cancerous diffuse intrinsic pontine glioma (DIPG). The family pictured together
The family hopes to raise £ 125,000 for treatment that may double Charlie's life expectancy. In the photo, Charlie turned his eye inside because of the brain tumor
Stephenson, 44, a truck driver from Martham, Norfolk, said: “We never thought that a lazy eye would turn out to be something so devastating.
& # 39; They think he will have six good months and the last three months the tumor will rob him of his eyesight, his ability to communicate, to nourish himself and affect his breathing and heartbeat.
& # 39; He could have effectively committed himself to a syndrome that is a horrible way for everyone – let alone a nine-year-old boy.
& # 39; It was a total shock when we were told. I had a bumpy, resilient boy who had a lot of fun. Life was great when our life collapsed in less than 10 minutes.
& # 39; I feel empty. Many things don't seem worth doing, but I'm just trying to do everything I can and use everything to give him what he asks for. & # 39;
Mr. Stephenson added: & I can't even think so far ahead that he won't be there. My wife already dreams of what he will wear at his funeral. & # 39;
He and Mrs. Stephenson, 41, a caregiver, both gave up their work to look after their son after his diagnosis.
They noticed for the first time that Charlie & # 39; s left eye looked lazy and started turning in earlier this year.
Two weeks after they noticed, they took him to the doctor and he was referred to the pediatric ward of James Paget University Hospital in Great Yarmouth.
Three days after the referral was made, they took Charlie to A&E after he had double vision.
A CT scan detected a shadow in the back of his brain and he was transferred to Addenbrooke & # 39; s Hospital in Cambridge.
After an MRI scan, he was diagnosed with DIPG on 12 February – which cannot be operated on due to its location in the punching area of the brain.
Stephenson said: & we were taken to a room with about seven different medical professionals, so at the time we thought: "this is much worse than initially thought". The first word the consultant said was "sorry."
& # 39; We were told that it was non-operable brain cancer and that the chance of survival was zero.
& # 39; The expression they used was & # 39; stupid luck & # 39 ;. There is nothing genetic or ecological that it could have affected. & # 39;
Stephenson said: “We have taken pictures of him for hours to see if there is anything that we have missed. Pictured, Charlie for his diagnosis
Charlie has nine to twelve months to live, but doctors say there is no guarantee. Shown before diagnosis
Charlie has had 13 radiotherapy sessions for three weeks and is now on a course of steroids that makes him arrive (pictured)
Mr. Stephenson said: & I had a good, bouncy, boy who was full of fun. Life was great when our lives fell apart in less than 10 minutes & # 39 ;. In the photo, the family since Charlie was diagnosed
Diffuse intrinsic pontine glioma, also known as diffuse midline glioma, is a brain tumor found in a part of the brainstem called the punch.
The punch controls essential body functions such as heartbeat, breathing, swallowing, eye movement, eyesight and balance, and therefore the cancer affects a child's ability to move, communicate and even eat and drink.
Approximately 20 to 40 children in the UK and 150 to 300 patients in the US are diagnosed annually.
Stephenson said: & # 39; There were no other symptoms or things to watch out for.
& # 39; We took pictures of him for hours to see if there was anything we missed.
& # 39; They told us if he didn't have radiotherapy that we watched for up to six months.
& # 39; With palliative radiotherapy he has nine to twelve months, but there is no guarantee. & # 39;
Charlie, pictured in the hospital, loses sight, communication and coordination as the tumor grows and presses on the nerves
Mr. and Mrs. Stephenson do their best to make the best use of Charlie's remaining days, but say it was difficult. Charlie introduced himself with his mother on an unknown date
Charlie has had 13 radiotherapy sessions for three weeks and is now in a course of steroids to try and relieve symptoms, including unclear speech and difficulty in walking.
The family is now looking at £ 125,000 for a procedure that is not available on the NHS.
Although it does not provide a cure, it could extend Charlie's life – in some cases a doubling of life expectancy – and give him a & # 39; better death & # 39; can give.
The procedure, called Convection Enhanced Delivery, delivers chemotherapy directly to the tumor through four narrow hollow tubes that are inserted into the brain.
It is for high-quality tumors that cannot be used due to their location.
Currently, the private Harley Street Clinic Children & # 39; s Hospital in London is using CED to treat children with this very rare cancer.
The pair has managed to raise more than £ 25,000 so far, thanks to the community that recruits around to help and are also excited to raise awareness of the rare cancer.
Stephenson said: “It's amazing how resilient he is. He tries to get a smile on his face. We told him he has cancer, but he is not fully aware of what cancer is.
& # 39; We didn't tell him he's dying because he just gives up. He asked us that question and we explained that people die of cancer. We have tried to be as true as possible.
& # 39; It is heartbreaking to hear that your child is asking that question.
& # 39; We try to remain hopeful, but I am also a realist and we know we should spend as much quality time with him as possible.
& # 39; It's about helping him enjoy the things he likes to do. He loves to play Fortnite [a game] and he loves being in nature. & # 39;
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WHAT IS DIFFUSE INTRINSIC PONTINE GLIOMA (DIPG)?
Diffuse intrinsic pontine glioma (DIPG) is a rare type of brain tumor
Diffuse intrinsic pontine glioma (DIPG) is a rare type of brain tumor that cannot be operated on because of its location in a crucial part of the brain, the so-called punch.
This area is responsible for a number of critical body functions such as breathing, sleep and blood pressure.
The high-quality brain tumor, which primarily affects children, tends to grow rapidly and often spreads to other parts of the brain or spinal cord.
Most diagnoses occur among young people between five and ten years old. The cause of the tumor is unknown.
More than 90 percent of the victims die within 18 months of diagnosis, according to figures.
Every year there are around 100 to 150 new diagnoses in the US. In the United Kingdom it falls between 20 and 30 every year.
Symptoms include a lack of facial control, double vision, headache, vomiting, weakness, seizures, and balance problems.
One of the first indicators of cancer is a child who falls, stumbles, or loses balance.