Young brothers take part in Oli’s Safari Walk as ‘thank you’ after both had brain ops at Alder Hey

Two young brothers are taking part in this year’s Oli’s Safari Walk for Alder Hey Children’s Charity after they both underwent life-saving brain operations at the Liverpool hospital.

Leo and Mason Rowe from Hunts Cross suffer from cavernomas (abnormal blood vessels on the brain) which can cause life-threatening haemorrhages and life-lasting symptoms.

The boys, aged eight and three, will be taking part in Oli’s Safari Walk, a 3km trek through Knowsley Safari’s grounds, in May with their mum and dad, Lyndsey and Robert, and it’s their chance to thank Alder Hey for their ‘amazing’ care and treatment: “And for saving their lives,” says Lyndsey.

She admits: “It’s our third Oli’s Safari Walk and it’s definitely going to be the most emotional after both our sons have now had major brain surgeries because of cavernomas.

“We’ll be able to hold hands as we cross the finishing line, and it will be our thank you to Alder Hey for all that they’ve done for us – and will continue to do.

“And it will hopefully symbolise a positive step forward for Leo and Mason in terms of their recovery.”

Lyndsey, 34, a former social media manager for Miss British Isles, first rushed to Alder Hey with three-year-old Mason.

Then just nine months old, he was crawling and pulling himself up: “He was doing amazing,” says Lyndsey. “But one day he was crawling and I was trying to get him to come with me and he wasn’t following which seemed odd.

“I realised he wasn’t moving his right arm and leg, and his face had started to droop and his head tilted to one side.”

Doctors diagnosed a stroke and discovered that Mason has cavernomas, including one on his brain stem which was extremely dangerous and had caused the stroke.

They told Lyndsey and Rob, 33, a talent acquisition manager, they would need to operate to remove it but the decision was made to wait until Mason had met certain developmental milestones. Six months later he started to have seizures – caused by another, smaller cavernoma.

In April 2023 surgeons were forced to operate on the cavernoma causing the seizures, then six weeks later they removed the major one from Mason’s brain stem.

“Since the stroke Mason can’t use his right arm but he can now use his right leg and can walk and is trying to run, but he’s a bit wobbly.

“His development has been slowed but he has physio and occupational therapy and is starting to say a few words.

“Eventually we’re hoping he will get his full speech and mobility back, especially once he is older and understands more. At the moment he doesn’t use his right arm and finds ways to do things with his left, but hopefully once he’s able to understand it’s better for him to learn how to use it, he will.

Lyndsey discovered she had cavernomas when she was 18 and began to have seizures.

Like Mason now, she was put on anti-epileptic medication but has never ruled out the possibility that she may, one day, have to have surgery too.

It was never explained to her that cavernomas were hereditary: “So of course I felt it was my fault, even though it wasn’t,” she says. “I felt awful when I found out.”

A cavernoma is a cluster of abnormal blood vessels, usually found in the brain and spinal cord. A typical cavernoma looks like a raspberry and is filled with blood that flows slowly through vessels that are like ‘caverns’.

A cavernoma doesn’t always cause symptoms, but when it does it can lead to bleeding (haemorrhage), seizures, headaches, other neurological problems and strokes.

A haemorrhage could be fatal.

Although he had a seizure at 18 months old, Leo seemed to have escaped the worst symptoms of the condition and was doing well at Springwood Heath Primary where he goes, even performing in the West End with the Pauline Quirke Academy in Across the Line.

But when he went for a routine scan in September last year, it was discovered that Leo’s cavernoma had grown and needed urgently taking out.

Unless it was removed he faced hydrocephalus, where too much cerebrospinal fluid builds up in the brain, and sight loss.

“Leo had his operation at the end of January and he’s doing really well. But it’s been very hard dealing with everything, physically and emotionally.

“I need to be with Mason 24-7 as he knows no fear. There are things he can’t do – but he will try! Me and Rob got married in August 2022 and we’ve still not had a honeymoon!” smiles Lyndsey.

“I’m still trying to get my head around Leo and Mason and what’s happened, and they are the important ones. Our lives revolve around them. They are our priority.

“Doing Oil’s Safari Walk is important because we owe Alder Hey everything. I could never give back to them what they have given me.

“I decided that anything I could do I would and raising money is one of them because I have seen what this money does with the research and things like the MediCinema that’s just opened at Alder Hey to give young patients some normality and fun.”

Lyndsey, who has also helped other mums and people with cavernomas who’ve reached out to her Instagram page, adds: “Leo is very excited about doing the walk.

“He’s helping the people who have helped him and Mason.  Leo loved Alder Hey so much he even contemplated asking to stay another night!”

You can support Lyndsey, Rob, Leo and Mason here.

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