Luke’s Life Legacy – one mum’s mission to make a difference
When he went blind and traditional playthings turned from fun to frustrating, they became his favourite toys so have been incorporated into the logo for the charity set up in his name, Luke’s Life Legacy.
As well as raising money for research into finding a cure for children’s brain cancer, particularly low-grade gliomas, it is aiming to buy a house providing a home-from-home for families with a sick child in hospital.
Memories of her youngest being calm and content with something as simple as a box of straws are vital to his mum, Fiona, who describes what happened to her baby as every parents’ worst nightmare.
She was changing Luke’s nappy one days when she noticed his eyes wobble. Just 24 hours later, Fiona and her husband Martin from Newcastle were being told that their seven-month-old had a Visual Pathway Glioma – a brain tumour on his optic nerve.
Chemotherapy started a week later but the cancer did not respond to treatment and, by 18-months-old, he had completely lost his eyesight. A form of medication was found but it made him so poorly that Luke spent almost six months in hospital being fed directly into his veins as he had become so emaciated.
In 2013 a new drug for the UK, Avastin, was given and Luke had the best year of his life, even going to school and making friends for the first time ever.
“After a year this was stopped to give his body a break and, to everyone’s horror the tumour began to grown uncontrollably in January 2014,” Fiona said.
“Luke stopped walking and drifted in and out of consciousness in hospital. After a trip to Alder Hey Children’s Hospital in March for debulking surgery, we were hoping to travel to America for Proton Beam Radiation but sadly not enough tumour was taken away in Liverpool for radiotherapy to be a viable option.
“Luke passed away in my arms, after a life-long battle in June 2014 leaving a massive void in our lives.”
- Around 400 children under the age of 15 are diagnosed with a brain, other central nervous system or intercranial tumour in Britain each year
- Brain tumours are the biggest cancer killer of children in the UK
- Around half of all childhood brain tumours are a type of glioma
- Gliomas are usually slow-growing and found in children
- The survival rate for optic pathway gliomas is almost 90 per cent – although many children are left with permanent disabilities
- Brain tumour research receives 0.7 per cent of national cancer research spending in the UK, with only a tiny percentage going to glioma research
She said her decision to set up a charity in his memory was almost instant, despite her husband’s understandable reluctance. “He thought I had been through enough but I knew that I had to do something,” explained Fiona, 40, who had given up her job as a teacher to care for Luke after he was diagnosed.
What was started by close friends as a fundraising group, Luke’s Life Long Labour, to pay for possible overseas treatments, became Luke’s Life Legacy after his death which now has a committee of 10, including Martin.
“When he passed away we had collected a lot of money but I was keen that it was spent on research into low-grade gliomas, like Luke’s.”
The charity has already held a fundraising ball, regular bag packs and sells a range of gift items at fairs and through its online shop. One of its most popular products is ‘Lukey Bear’ who even has his own Facebook page showing the exotic locations he has been taken on holiday by his young owners.
Someone with his own cuddly memento which lives on his bed is Luke’s eight-year-old brother, Matthew, eight, who has played a big part in holding the family together.
“At events he is fantastic at talking to members of the public about what has happened. He is amazing and I call him my ‘angel’. If it wasn’t for him things could have been very different, he is an inspiration,” Fiona added.
As well as helping to pay for medical breakthroughs, the Luke’s Life Legacy is determined to purchase a house, ideally in North Tyneside, to provide families of children with brain tumours accommodation when travelling to any hospital within the Northumberland, Tyne and Wear Foundation Trust.
“People travel from the south of Scotland, from Whitehaven and North Yorkshire to have treatment in Newcastle which puts incredible strain on families. We will get there because I’m very determined.”
Fiona said that when Luke was diagnosed she was surprised at how many children there were in hospital with brain tumours – the biggest cancer killer of UK children- and she is determined to make a difference.
“If someone had done this 10 years ago it might have helped us. We owe it to Luke.”
Website: www.lukeslifelegacy.org Email: firstname.lastname@example.org
Facebook: Luke’s Life Legacy Twitter: @LukesLifeLegacy