Being told your child has nine months to live is a nightmare no parent should have to go through.
Paula Logan was told by doctors her six-year-old son has a rare terminal brain tumour, news which has left his family feeling shell-shocked. Cheeky chappy Alex, a pupil at Prestonpans Infant School, was living a normal life until his teacher noticed a change in his behaviour.
The youngster was referred to a doctor who carried out an MRI scan which revealed he had diffuse intrinsic pontine glioma (DIPG). DIPG is a type of high grade brain tumour that tends to grow quickly and is more likely to spread to other parts of the brain or spinal cord.
Paula, 29, said: “Looking at him, there was nothing wrong. So when I was told he had DIPG I didn’t know what to do. We were all distraught. It felt like we were in a daze. The last thing as a mum you want to hear is that. We were crying for days and days and it felt like a living nightmare.”
After being diagnosed in September last year, brave Alex spent six weeks in Glasgow Sick Kids Hospital where he underwent radiotherapy and also began a medical trial known as BIOMEDE. The family was told that the NHS could only provide Alex 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. Other treatments are available abroad including immunotherapy and intra-arterial chemotherapy, with the latter currently being used on eight-year-old Luke Stewart from Tranent, who also has DIPG, in Mexico.
Former Poundland worker Paula said: “I think the cost of treatment is £35,000 each time and it isn’t known how many times he will need the treatment. Obviously we just want to give him the best possible life and create happy memories. Alex is caring, gentle, clever and so happy. I couldn’t be prouder.
“It was a shock to see him change drastically within two weeks of being diagnosed and now his breathing, mobility, eyesight and speech is affected and we’ve been told they will deteriorate in time.
“It is so crucial to make every second count now and be with him all the time.”
Alex is on a trial drug and has a scan every eight weeks for an update on the tumour.
The family are grateful for everyone who managed to raise £23,500 through an online Just Giving page following Alex’s diagnosis.
Now Ross Koppel, 33, owner of Seconds Out Fight Store, has organised a black tie event with special boxing guests Ken Buchanan, Josh Taylor and MC Craig Stephens in the hope of raising £25,000 towards Alex’s treatment. The event takes place on April 13 at the Corn Exchange and will feature a question and answer session, three course meal, charity auction and live bands.
Ross said: “As soon as I read Alex’s story I knew I had to get involved. The night promises to be fun and entertaining with a serious message to support a local boy and his family and raise awareness of DIPG.”
Paula added: “I can’t thank everyone enough for their amazing support. I’m so busy looking after Alex and my nine-year-old daughter Eva. We will see what treatment we think Alex needs at the time.”
Tickets are £65 and are available from Seconds Out and at www.seconds-out.co.uk. People can donate to Alex’s treatment at http://bit.ly/2EVnO5G