Boy who kept falling over is diagnosed with terminal cancer
PARENTS SPEAK OF DEVASTATION AND HOPES OF TREATMENT ABROAD
JUST before Christmas last year, the family of a five-year-old boy noticed he had become more clumsy and was repeatedly falling down.
Though it seemed like a minor issue, Albie Korinek turned out to have a rare and incurable brain tumour.
Dad Alois Korinek recalled how, while on holiday in Greece in October, Albie had been complaining of being much more tired than usual and was repeatedly asking to go home.
His parents also noticed he had been dribbling but “never imagined” it could be anything sinister.
After a conversation with his teacher, who said Albie was frequently zoning out, they booked an appointment with a GP.
Immediately, the Acton family were told to take him to A&E where he underwent brain scans to assess what was causing the symptoms that Albie simply described as an “ouchy.”
Al and mum Justyna Mackowska were then thrown into limbo while they waited for two days for the results.
They were initially told his condition – Diffuse Intrinsic Pontine Glioma (DIPG) – could be fixed with medication. Al, 46, described the moment he thought his son’s condition was treatable.
He said: “We went for two days, the longest two days of our lives. We were waiting and they came back to us and they said ‘luckily, it’s something we can just deal with using medication, we don’t have to operate or anything like that.’”
He added: “We were in Isleworth by the Thames and I just went down there and said ‘thank God for that’. I was just sitting by the river and it was just a blessing, saying thank you so much.”
However, they were then told there had been a mistake at the hospital and that Albie actually had an incurable brain tumour.
Al described hearing the devastating news. He said: “I was just walking home at the time and I was just screaming saying, ‘no, no, no, no, no, no.’ It’s just honestly heartbreaking. It was awful.”
He added: “The nurse or doctor who was telling us, she just started crying herself. She was just saying, ‘I’m so, so sorry’.”
The news was a second blow to the family, as just a month before, Justyna’s father had died in Poland and they cancelled Christmas to fly out. Al and Justyna have split up but, following the devastation, Al has moved back in to spend time with Albie and try to survive their “worst nightmare.”
Al described how his friend had summed up their trauma: “Even if you had the best luck in the world for the next 20 years, it would still only come out as average.”
Albie has now had 13 sessions of radiotherapy and can have more rounds in six months. Covid restrictions meant only one parent was able to sit with him while he underwent treatment.
However, wise-cracking Albie found a way to make Al feel better for missing the sessions.
Al said: “I said, ‘ Alright Albie, there’s only one parent allowed and you chose mum.’ And he said, ‘Er, but that’s because you need to stay at home and look after the goldfish’.”
Similarly, when they visited the 11th floor of University College London Hospitals, Albie told his dad: “You need to stay home because you don’t like heights.”
Al recalled anecdotes proving what a special child Albie really is. At three years old, he was demonstrating signs of a photographic memory as he could recall all the Tube stops they would visit from East Acton in a day. He enjoys watching films, such as Paddington, and was even lucky enough to watch Spider-Man: No Way Home in a private screening on account of his love of the superhero – though Al did not realise it was a 12-rated movie beforehand. Now, the family is desperately raising funds for experimental treatments abroad and other methods to extend Albie’s life, which are not available on the NHS.
Germany offers a £5,000-a-month treatment which, it is hoped, will shrink the tumour. The family is waiting for a biopsy report to see if
Albie is eligible.
Justyna and Al are determined to do all they can to give their son the best chance at life.
“I’m not giving up,” said Al. He describes Albie as “the most amazing, funny, happy, hilarious, kid,” and his “best friend by a million miles.”
Family and friends have set up a GoFundMe page to raise money for the treatments so that as soon as he is accepted onto a programme, they have the funds to afford to drop everything and fly him wherever he needs to go.
Luckily, Al says the family has an amazing support network on hand to help them cope with every parents’ worst nightmare. His sister has been baking cookies and “10 kilograms of lasagne” every day, while Albie’s cousins have been dressing up as his favourite superheroes to cheer him up – they even made a book full of pictures of heroes for him.
Similarly, Al has been moved by the generosity of complete strangers and people he has not seen for 30 years who have donated to the crowdfunder, describing it as “humanity at its best”.
“I’m in fight mode,” said Al. “I definitely just want to do what I can and just look after my boy and just do something to help him.”
The fundraising page has so far raised over £27,000. To donate, visit shorturl.at/ciCK6
The nurse or doctor who was telling us, she just started crying herself. She was just saying ‘I’m so sorry’
Al Korinek