The parents of a three-year-old have been told their son has just months to live after his crooked smile turned out to be a brain tumour.
Wesley Lacey, 28, and Rebecca Oldham, 29, weren’t too concerned when they noticed their son, Jack Lacey, was smiling on one side.
It was only when he started to walk with his hands out in front of him and screaming in the night that they took him for a check-up.
The couple, from Sheffield, South Yorkshire, were devastated to find out Jack had a Diffuse Pontine Glioma (DIPG) – an aggressive brain tumour.
The tumour had caused a change in behaviour, and will cut the toddler’s life short in six to twelve months.
Just ten per cent of children with DIPG survive longer than two years after diagnosis, according to figures.
Wesley Lacey, 28 and his partner Rebecca Oldham, 29, noticed their son, Jack Lacey, was smiling on one side (pictured) but weren’t too concerned
Jack, from Sheffield, South Yorkshire, was diagnosed with a Diffuse Pontine Glioma (DIPG) – an aggressive brain tumour with low survival rates (pictured after an operation)
The couple, pictured with Jack and their two-year-old daughter Charlotte, have been told their son has six to twelve months to live
Father-of-two, Mr Lacey said: ‘We are broken. This news has been the darkest time of our lives, I can’t even begin to think about him not being there.
‘He hasn’t got any relatives who have passed away, there’s no one waiting for him.
Speaking of the chain of events, Mr Lacey said: ‘Last month he started smiling with one side of his face, but we put it down to him seeing someone smiling like that and copying.
‘We didn’t take any notice because it was so gradual, we just thought it was a bit funny, but this is his new smile.’
Jack also developed what the couple thought was a tic, as he had started to blink with one eye.
It wasn’t until he began walking as though he was blindfolded, and instead of stepping up a curb, he would get onto the floor and crawl onto it.
Mr Lacey, a secondary school teacher, said: ‘Jack has been riding his bike since he was one, so to see him walking like that, I just knew something was wrong.
‘All of these symptoms came on within a four-week period and they weren’t obvious things. We put them down to growing up and him becoming his own littler person.’
Doctors at Sheffield Children’s Hospital told Jack’s parents after a CT scan that the aggressive tumour, which may have been there for a long time, was terminal.
The brain tumour could have been growing for a long time. It caused Jack to walk with his hands out in front of him, have night terrors, and blink as though he had a tic
Jack, pictured after his biopsy operation, would scream in the night – but his parents thought he was having nightmares
Mr Lacey, a secondary school teacher, said the symptoms slowly developed over four weeks
Diffuse Intrinsic Pontine Glioma also known as ‘DIPG’ is the second most common type of primary, high grade brain tumour in children, starting in the brain.
They tend to grow quickly and have limited treatment options.
Jack had a biopsy in February and a device fitted to help fight the tumour.
Mr Lacey said: ‘We’ve been told by our consultant that six months is about average for the type of cancerous tumour Jack has.
‘It is 12 months being from those who have a really positive reaction to treatment.
‘The crazy thing is, the symptoms came about in the last four weeks, however, we’ve been told that the tumour has been growing for many months without symptoms.
‘The tumour he has, is a known fast, aggressive killer.’
Jack is currently at home with his parents and two-year-old sister, Charlotte, but the couple have said that his personality is slowly changing due to the medication he is on.
Mr Lacey said: ‘His behaviour not what it should be.
Mr Lacey said Jack’s behaviour has changed since he started having medication, picking up bad language and being aggressive. Pictured at home
The family are raising money to help towards funeral costs, and to give Jack some days out during his time left
‘He was always a loving boy but now there have been times where he is absolutely crazy, with shouting and swearing from the drugs he’s been given. The steroids have made him aggressive.
‘Our little boy deserves to spend as many days as he can, enjoying what time he has left and as you can imagine, we all had so many plans.’
The family are now raising money to help towards funeral costs, and to give Jack some days out during his time left.
Mr Lacey said: ‘We want to use the money to fund day trips out, holidays, presents, meals out.
‘We also want to take him to the cinema for the first time and buy him a dog. Jack’s already said he wants to call him Waffle.
‘We don’t want to think about this but it will also fund his funeral.
‘He never stops talking, joking and will play his little heart out, even when sick, as we have recently seen. He will be missed beyond words.’
To help Jack’s family raise money please visit their fundraising page.
Just ten per cent of children with DIPG survive longer than two years after diagnosis
WHAT IS DIFFUSE INTRINSIC PONTINE GLIOMA (DIPG)?
Diffuse intrinsic pontine glioma (DIPG) is a rare type of brain tumour
Diffuse intrinsic pontine glioma (DIPG) is a rare type of brain tumour that can’t be operated on because of it’s location within a crucial part of the brain, called the pons.
This area is responsible for a number of critical bodily functions, such as breathing, sleeping and blood pressure.
The high-grade brain tumour, which mostly affects children, tends to grow quickly and often spreads to other parts of the brain or spinal cord.
Most diagnoses occur in youngsters between the ages of five and 10. The cause of the tumour remains unknown.
More than 90 per cent of its victims will die within 18 months of diagnosis, according to figures.
Each year, there are around 100 to 150 new diagnoses in the US. In the UK, it strikes between 20 and 30 each year.
Symptoms include lack of facial control, double vision, headaches, vomiting, weakness, seizures and balance problems.
One of the early indicators of the cancer is a child falling, tripping or losing balance.