The mum of a terminally-ill youngster who was given just months to live says she is “very scared” that the money raised to provide him with life-saving treatment in Mexico will run out.
In an emotional interview, Jennifer Ure Stewart, from Tranent, told the Evening News she will lose her eight-year-old son Luke, who is suffering from an aggressive rare brain tumour, if the funds dry up.
Jennifer has £35,000, enough money to pay for his next two Intra-Arterial (IA) treatments at the Monterrey Vale Oriente hospital, where Luke is due to receive his 11th treatment at the end of this month.
However, she doesn’t know what the future holds and requires around £200,000 to pay for this year’s round of care which has so far benefited her young son.
Luke was diagnosed with a brain tumour known as Diffuse Intrinsic Pontine Giloma (DIPG) last January, with doctors only giving him six to nine months to live.
This spurred the family into a mammoth fundraising campaign which to date has raised an incredible £186,500 on a JustGiving page for his treatment, with family, friends and the local community rallying to the call.
Proud mum Jennifer, who has two other sons, Lewis, five, and Lochrin, two, said Luke’s tumour has shrunk to the extent that a No Evidence of Disease (NED) diagnosis is tantalisingly close.
She said: “If he stops his treatment we’re going to watch my son die, we’re going to watch him deteriorate and go downhill in front of our eyes because there’s nothing else that can stop this happening.
“There’s nothing in this country unless they come up with something next week, which isn’t going to happen.
“There’s research going on and the brain tumour charity have just given a grant to a university in Ireland and money has been donated to go into DIPG research, but it’s not going to be tomorrow that they come up with something.
“I don’t even feel frustrated about it – I feel gutted because we’re at the stage where these treatments are clearly helping Luke.
“It’s showing up on the scans that the treatment is helping him, and to get to the stage where you don’t have the money is just heartbreaking.
“It’s heartbreaking because you still have a terminally ill child – the prognosis hasn’t changed because the treatment’s too soon to tell and you don’t have enough money to keep it going.”
She added: “I would love the treatment to be available here but there’s nothing in the UK.
“I don’t want to get angry because anger is not going to get me anywhere.
“I just have to focus on Luke and stay positive for him and be positive about the treatment he’s receiving in Mexico.
“There’s no point in getting angry it’s just using up my energy.”
Jennifer says the IA treatment that Luke receives is £15,000 a time and it costs a further £10,000 if the doctors decided that he also has to have immunotherapy alongside it.
Travelling expenses are around £2,500 for flights and accommodation in Mexico and Jennifer has now launched a campaign urging social media followers of the Help Luke campaign to pledge £5 per month.
She said: “If we had done nothing then heart-to-heart I don’t think Luke would be here, I really don’t.
“I wouldn’t be able to continue without the support we’ve received from people and that’s not just the money, it’s the comments that I get, the people coming up to speak to me in the streets asking how Luke is.
“It’s so heart-warming that people are so interested in him and they’ve fallen in love with him like we have as a family.
“Luke’s extremely aware of the situation and asks if he’s famous. He says, ‘Mummy, does everybody know me – am I famous?’
“There’s no secrets, he knows that we need to fundraise to get him his treatments in Mexico and he knows that the treatments are helping him.
“Luke knows he needs the treatments and he knows that they cost a lot of money.”
The family was told that the NHS could only provide Luke with radiotherapy to give him a semblance of quality life.
According to the Brain Tumour Charity, only around ten per cent of children with DIPG survive longer than two years from diagnosis.
Jennifer said that every piece of vital medication Luke has been prescribed in Mexico is not available on the NHS in the UK.
She added: “It’s absolutely incredible that people are still helping us.
“We’ve started a campaign to get 3,000 people to donate £5 each month which would cover Luke’s treatment, and if we did small fundraisers in between that would cover our flights.
“That would be £15k a month and would cover his treatments for the year and then we could look to see if people wanted to continue contributing next year.
“That would mean that we wouldn’t have to keep saying, ‘Oh we need more money, we need more money’.
“People donate to Cancer Research, to Alzheimer’s – things that are close to their heart but all we’re asking for is the cost of a cup of coffee and a cake each month. It would completely change our outlook on it as it would take a weight off our shoulders.”
Jennifer said that the treatment had allowed her son to continue with his schooling and allowed the football-mad youngster to lead a normal life.
She said: “He hasn’t got any lifting movement in his arm but he can do a full body plank for 30 seconds and he’s got the strength to do press-ups.
“We’re probably going to have to get an MRI scan on his arm to find out where the damage is and if it’s recoverable, but at the end of the day he’s adapted his whole life around not using his left arm.”
Iain Gray, Labour MSP for East Lothian, highlighted Luke’s case along with another youngster, Alex Logan, who lives in Prestonpans, in a Holyrood debate last month on rare brain tumour cases.
He said: “I recently raised Luke’s case in parliament, along with that of Alex Logan from Prestonpans, who also suffers DIPG. The fact is that brain tumours kill more children and adults under the age of 40 than any other cancer, yet less than two per cent of cancer research spending in the UK is dedicated to work on brain tumours.
“It is quite wrong that Luke has to travel to Mexico for treatment, and wrong that Luke and Alex’s family have to fundraise to pay for it. The minister for public health asked to meet these two families, so we will have the chance to make that point directly to her.”