Doctors thought Max had a virus but the reality was heartbreaking

Mum and Son Keira and Maximus Johnson
-Credit: (Image: Keira Johnson)

A mum has said her little boy doesn’t know “what a normal life is” after he received a “life-changing” diagnosis.

Maximus Johnson, from Lydiate, is seven and has been fighting brain cancer before he even celebrated his first birthday. Since his diagnosis, the youngster has gone through a huge amount.

‘Mighty Max’ has had six brain tumours, nearly 30 doses of chemotherapy, 93 sessions of radiotherapy, numerous surgeries and blood transfusions. As a result of all this, Max has developed “life-changing” conditions.

Keira, originally from Aintree, told the ECHO: “He does not know what it is like to live a normal life and that's heartbreaking to watch. It's been constant for him. He falls over a lot because of where the original tumour is - he hasn't got great balance. He is in mainstream school but he tends to play with the girls in school because they are a lot more gentle and he can't keep up with the boys playing football.

"He always asks me if he will be able to play football or run faster with the other boys when he is older and it is heartbreaking. All I want is for him to be able to do these things."

Max, a Lydiate primary school pupil, was diagnosed back on October 2nd, 2017, at just 10 months old - a day Keira “will never forget”. The GP initially thought Max had a viral bug, but the sickness he had continued and the family noticed his right eye would occasionally roll.

A 6cm tumour in the back of Max’s brain was diagnosed as an ependymoma, a growth of cells that forms a tumour. At the time, the family were told Max had a 50% chance of survival - a percentage that has “got much lower over the years”, according to his mum.

The tumour has come back five times, and as it stands, Keira said the family are just “buying time”. This is because when these types of tumours reappear, radiotherapy and surgery tends to only be effective in a few patients, she said.

Maximus Johnson, from Lydiate
Maximus Johnson, from Lydiate -Credit:Keira Johnson

Keira and the family are aiming to raise enough money via a GoFundMe to take Max to Germany. There, they hope a more “personalised approach” to Max’s health will give them enough time until a new treatment is trialled in Australia.

The mum-of-three said: “Treatment options have remained unchanged for the past 30 years but quite recently there has been a huge advancement in Immunotherapy to treat cancer.

“Immunotherapy induces the immune system to fight against these tumours and the UK has started using it to treat other cancers, but unfortunately it is not available here for the cancer that Max has.

Max with mum Keira at Alder Hey Children's Hospital
Max with mum Keira at Alder Hey Children's Hospital -Credit:Keira Johnson

“Therefore we need to go to Germany where they will be able to use personalised treatment to hopefully save my beautiful, caring and kind little boy.

"There is no more standard of care treatment available for Max on the NHS but we know people who have gone to Germany and have lived longer than what they expected and others have had their diagnosis prolonged. We want to get as much time with Max as we can"

Keira explained how the advanced treatment, on top of travel, accommodation and insurance, is simply not in the family’s means. Hence why they have chosen to rely on the “kindness and generosity of others to help save Max”.

The family hope to raise £150,000 - the GoFundMe can be donated here. The latest fundraising activity will see parents from Max's school walk 13 miles to Alder Hey Children's Hospital to raise awareness.

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