'Dream team' rally round for the love of Lewis

It was this emotive line from a mother to friends that had offered to help her family for years, that finally set the ball rolling on what has become an incredibly powerful and determined fundraising mission.

Sharon and Daniel White, from Bryn y Baal, are parents to 13-year-old Lewis, and daughters, Lauren, Alex and Sadie.

Lewis was an active, fun-loving child, who like any other, enjoyed swimming, Taekwondo and his scooter – in fact anything on wheels, with Lewis a huge fan of motorcyclist Valentino Rossi.

But in 2014, at only seven-years-old, everything changed for the family when Lewis suffered an acute left middle cerebral artery stroke, which affected the right side of his body rendering him unable to walk, talk or even eat.

His treatment was to be Lewis' first experience of the care under the experts in Alder Hey Hospital.

Whilst undergoing further tests in the hospital, it was found Lewis was anticoagulant positive and started on warfarin to thin his blood, but worse news followed when they declared he was suffering with a very rare vasculitic disease called Pan Vasculitis which affected his brain, liver, kidneys, spleen and bowel which without treatment would result in organ failure.

Happier time for Lewis White and his parents, Daniel and Sharon.

He began chemotherapy and was placed on a high dose of steroids for seven months, which appeared to stop the disease in his organs.

This victory was short lived when the disease returned the following year but this time in his brain resulting in him adding to the concoction of drugs he was taking with immune suppressants to try and control the disease and additional drugs to control high blood pressure too.

Lewis continued to have regular MRI scans and tests over the years providing the family with assurances that his condition was stabilising and at some point even recovering, however at the beginning of 2019 a routine MRI showed that whilst the Pan Vasculitis was no longer active, it had caused damage to the blood vessels in his brain and these were deteriorating. He was losing the blood flow in both sides of the front of his brain. This was causing him to have mini strokes which would eventually cause larger strokes.

In November 2019, he underwent a 10-hour surgery under the care of a specialist team from Manchester who came to Alder Hey to perform revascularisation surgery, which took the main artery from the side of his head, removed a piece of skull and connected the artery to the surface of his brain on both sides to try and improve the blood supply.

Lewis came round after the surgery, but unfortunately that night he suffered a further three strokes, this time affecting the left side of his brain and his speech.

Once again facing rehabilitation, he amazed everyone with his determination.

Yet following on from triumph came tragedy, when on November 28, 2019 the artery that had been used on the left side of his brain in the surgery tore, resulting in an acute severe haemorrhage which shunted his brain to the right side of his head. Lewis was rushed into surgery in the early hours and his parents were told he may not survive.

Despite glimmers of hope, an MRI scan at the beginning of 2020 showed that the bleed had caused Lewis to suffer severe brain damage and is unlikely to make much recovery, so in June he was transferred from Alder Hey to The Children's Trust in Surrey for rehabilitation, before returning home in September 2020 with his dad Daniel as his full-time carer and his mum Sharon juggling work and caring for Lewis.

Lewis remains in a minimally conscious state although he is making small improvements. He is unable to move his limbs voluntarily and is registered severely sight impaired. He is fed and given his meds by tube directly into his stomach.

Lewis also now suffers from a condition called dystonia, which causes his muscles to contract uncontrollably and can be very painful.

It was that severe, that whilst still in Alder Hey the muscle spasms caused him to suffer a broken hip.

Water really helps his muscles to relax and Lewis seems to enjoy having his arms and legs moved. Lewis is visibly more relaxed and comfortable during and after a bath, but right now he has to travel to Hope House (43 miles away), then return home in the harsh cold rather than being able to enjoy one in his own home and then relax.

Lewis White with his beloved dog Lola, and during treatment.

It's this piece of equipment that is now the main goal of a JustGiving fundraiser set up by close family friends Laraine Reynolds and Lynsey Green.

Their target is £15,000 - a basic bath (without lights and sounds to stimulate Lewis' senses) costs in excess of £11,000, then a changing table is required on top of that for £4,000.

And they're off to a roaring start. Less than 24 hours after setting the fundraising page up, they were already close to a third of the way and as of writing, they were closing in on £10,000.

Talking of the appeal's success, a shocked Lynsey said: "It's amazing, I struggle to find the right words to describe how this has all come about."

As well as donations, many people have also left messages of support for the family, which hasn't gone unnoticed, with Sharon wanting to pass on her gratitude: "We just wanted some way of thanking people for the messages they are leaving about him. It's been a really hard year and it's so lovely to read them all, I don't know of any other way of thanking people and telling them how much it means."

Fundraisers Lynsey Green and Laraine Reynolds.

But Lewis' 'dream team' are also people of action! Laraine and husband Phil, Lynsey and husband Gary, are all taking part in Dry January to help reach their target, with Gary also taking on a weight loss 'pound for a pound' challenge. And there are plans for more throughout the year.

Mynydd Isa FC are offering the club's support and Mynydd Isa Spartans Ladies FC are donating January's subscriptions to the cause.

Buckley-based double glazing supplier Rooms & Views are donating windows and doors to an extension at the family's home, with AT Green doing the electrics free of charge too, amongst several other offers of help.

With their goal looking more and more likely to become a reality, the family and their team of supporters are determined to help improve Lewis' quality of life.

• If you would like to make a donation or offer support, you can visit the JustGiving page here.