Lydiate mum’s £150,000 campaign to save her ‘Mighty Max’

A Lydiate mum is raising £150,000 to help fund cancer treatment in Germany for her seven-year-old son Max.

Keira Johnson is hoping advanced immunotherapy offered there will beat the brain cancer her little boy has been battling since he was only 10 months old.

She says:

“I want to do my best to get him life-saving treatment as the tumours keep returning and there is nothing else the NHS can do to cure him.

“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.”

“Max doesn’t know what it’s like to live a normal life, and do all the things that other children his age do.

“This could help him to do that.”

The campaign on GoFundMe is just over the half way mark with more than £75,000 already in the pot which Keira says is ‘amazing’.

“Max is my little boy and I will do everything I can for him,” she admits. “This could be the miracle we have been waiting for or, at the very least, it will give us time until we can try something else.”

Keira, who with husband, Tony, 44, has two other children, Jamie, 22, and Maizie, 14, had a normal pregnancy with Max – ‘or Mighty Max as we like to call him’.

It was only as he approached his first birthday that it became clear that something wasn’t right.

“Max was vomiting quite a lot and his right eye started to roll, especially when he was upset. But we thought he had a lazy eye.”

At first medics thought Max had a viral infection that was causing his sickness, but eventually a CT scan at Ormskirk Hospital in October 2017 revealed a 6cm mass at the back of his brain.

“He was diagnosed with ependymoma which if the third most common brain cancer in children,” explains Keira, who used to have her own beauty salon before devoting her time to caring for Max.

“We were told that he had a 50% chance of survival which made me feel sick, it was just horrible to hear that. There are many different types of ependymoma and the treatment for each is different. We were warned that in spite of surgery and chemotherapy, it would probably return – and it has.”

Over the last seven years Max, who was referred to Alder Hey Children’s Hospital, has undergone surgery on six tumours and endured 28 doses of chemotherapy and 93 sessions of radiotherapy. He had faced numerous blood transfusions and even had proton beam therapy at Christie Hospital in Manchester to try to tackle the cancer.

He’s had many infections – ‘we’ve been at Alder Hey more than we’ve been home’ – and there have been times when the popular Lydiate Primary pupil has been cancer clear.

“But then it’s always come back,” says Keira, who says the treatment has left Max with a number of other life-changing conditions. He is deaf in his right ear and has facial palsy, and he has scarring on his eye.

“He can’t walk very far because his balance has been affected, so he is in a pram because he’s still small, but he’ll eventually need a wheelchair.

“Yet he just gets on with it. Max is amazing. He is so loving and friendly; he has got so many friends in school, and he is such a caring boy who’ll do anything for anyone.”

Keira adds:

“The NHS and Alder Hey have been fantastic but now there’s nothing more they can do.

“Immunotherapy to treat cancer has advanced so much in recent years and induces the immune system to fight the cancer.

“Unfortunately, it’s not available in the UK for the type of cancer Max has. It is available in Germany,, but it is incredibly expensive and on top of treatment costs we will need travel, accommodation and insurance for a number of years. We set the target at £150,000 but it could be ongoing. We simply can’t afford this by ourselves and we are lucky to have so much support, but we also need to rely on the kindness and generosity of others to help us save our Maximus.”

Max has just had the first round of immunotherapy which included ozone therapy to boost the antioxidants in his body to stop cells being damaged; hypothermia treatment on his brain and back, heating it up to cause an immune response, and inhibitor therapy to help his body to fight the cancer cells, all leading to the creation of a vaccine too, given to further help his body fight the cancer.

He will need a second round of treatment at the beginning of September, and then another around three weeks later.

“It is trial treatment, and if it doesn’t help Max, it will provide research and vital information to help others like him in the future,” says Keira.

“I try not to let myself get too hopeful because we’ve been disappointed in the past, but we hope this will work.

“Max is such an amazing little boy and it is a privilege to be his mum and, with Tony, do what I can for him. We are extremely grateful if others can help us.”