JUST six months ago cheeky Mercy Cuthbertson was always full of energy and loved skipping into school every morning.
Tragically, the five-year-old now spends much of her life in hospital and has undergone three brain surgeries, 28 radiotherapy sessions and intense physiotherapy after being diagnosed with a rare, inoperable brain tumour.
4
Her parents Lorraine and Paul are desperate to raise £100,000 so Mercy can take part in a clinical trial abroad that could give her the chance of a future.
And her plight has even touched the hearts of TV’s Ant & Dec.
Lorraine told The Sun on Sunday: “So far we have raised nearly £80,000. It is a race against time to get the rest of the money we need to get her on a trial abroad for treatment.
“We will do absolutely anything to help save our daughter’s life to give her a chance of a future.
“I don’t want to say what the prognosis would be without this treatment, but it is bleak and something we just can’t comprehend.
“The treatment could manage the condition and manage the spread of the growth. There is no cure right now but that would give her time and one day there could be a cure.
Every penny counts
“This treatment could mean our little girl can celebrate more birthdays, it could mean she has an adult life to look forward to.”
Mercy was diagnosed last year with diffuse intrinsic pontine glioma.
The aggressive paediatric brain tumour can manifest quickly between the ages of five and ten.
It affects only about 20 to 30 children in Britain each year and does not respond well to chemotherapy.
Lorraine, 43, a Chief Inspector, and husband, Paul, 52, a constable, both with Northumbria Police, are still struggling to deal with the diagnosis.
Mercy suddenly stopped “racing” around the house last summer.
She was feeling tired and dizzy and didn’t even want to play.
The couple, from North Tyneside, took her to their GP and she was referred for tests.
Lorraine says: “I remember hearing, ‘brain tumour, inoperable, incurable’. My life stopped at that moment.
“Within weeks the radiotherapy started. The tumour had already affected her vision and mobility and soon she needed a wheelchair.
She couldn’t go to school, which was heartbreaking.
“Since then she has had an operation to relieve the pressure on her brain and things have improved slightly. She is more mobile and she can talk, although a little slower than before. It is gut-wrenching and heartbreaking. We are in a nightmare. It is like our world has been turned upside down — but we never let Mercy see how we are struggling.
“She’s been so brave. She doesn’t fully understand what is going on but is so resilient and such a happy, joyful little girl. Our employer has been amazing and given us the time off we need to deal with this. Mercy is at home with us. A couple of times a week she goes to the Great North Children’s Hospital in Newcastle’s Royal Victoria Infirmary.
“When she is there she doesn’t get upset or angry, she just gets on with it. She is an inspiration and I couldn’t be prouder of her. It feels so cruel that this is happening to our wonderful little girl.”
Mercy loves arts and crafts, watching cartoons or doing schoolwork on her iPad. And every day she watches her idols Ant & Dec.
Lorraine says: “She has loved them since she was tiny, watching Saturday Night Takeaway and Britain’s Got Talent. Her favourite episode is the one where the little dog runs from the stage and goes to bite Ant’s ankle. She watches it over and over again.
“A friend contacted them at Christmas and they sent a video saying they were thinking of her and sending her lots of love and a kiss. She was thrilled. It made her Christmas.”
And the North East community, where Ant and Dec hail from, have rallied around the family to try to help raise the money they so desperately need.
As well as a clinical trial, the money could go towards a drug — ONC201 — that could prolong Mercy’s life.
It is a relatively new treatment for stabilising a brain tumour but has not yet undergone all of the necessary clinical trials for licensed use on the NHS.
It is available to buy in France, Germany and the US and Mercy’s consultant is also exploring compassionate use of the drug, which would see it allowed here in her case.
Lorraine has spent hours searching for clinical trials, supported by charity Abbie’s Army.
There are two trials abroad which could accept Mercy if they can raise the cash and her consultant has already made contact about treatment.
Read more on the Scottish Sun
Lorraine says: “I want to see Mercy celebrate many more birthdays. I will not stop fighting for her but we need to raise the money to do that.
“I know everyone is struggling but every single penny counts and it all goes towards her medical care. It will give Mercy the best chance of fighting this monster disease.”
4
4