Farnborough family must raise £15,000 every year for son’s treatment

A Hampshire family must raise between £10,000 and £15,000 each year so their son can continue to have treatment for his cerebral palsy.

Ben Butler, 12, from Farnborough needs physiotherapy every day, and needs help with eating, drinking and personal care.

Cerebral palsy is the name for a group of lifelong conditions that affect movement and co-ordination. It’s caused by a problem with the brain that develops before, during or soon after birth.

Mikayla Butler, Ben’s mum, said: “Cerebral Palsy affects children in different ways but for Ben he is quadriplegic which means it affects all four limbs, which then affects his speech, his feeding and his toileting. He needs 24 hour care.”

Ben is also on the autistic spectrum but Mikayla explained neither condition puts him down.

She said: “He has the best sense of humour, he understands sarcasm and he is quite mature with his sense of humour. He is the most affectionate little boy, he always wants cuddles and kisses which obviously I love. My daughters are all younger than Ben but they’re already too independent.”

Ben has three younger sisters, Maddy, Teagan and Isabelle. The 12-year-old is a big film fan and loves watching behind the scenes content and 80s films: “He says he was born in the wrong era,” Mikayla joked.

When Ben was six-years-old his family flew him to the USA for Selective Dorsal Rhizotomy (SDR) therapy. SDR involves cutting off some of the sensory nerves that come from the muscles and enter the spinal cord.

For Ben, the surgery has significantly improved his life and he is now able to talk, walk with assistance and drink using cups.

Mikayla explained: “The operation relaxed his upper body quite a lot, it may seem like something small but it makes life so much easier. It was a big operation but the long-term benefits were so worth it.”

In order to have the surgery, the family had to raise £60,000 as the treatment was unavailable on the NHS. His post-operation treatment also has to be privately funded too. This means the family must raise at least £10,000 every year for physiotherapy and specialist equipment.

To raise funds, Mikayla organises events including black-tie balls and an annual skydive. In 2012, she completed the first skydive but now encourages others to take on the challenge.

She said: “It was amazing but I wouldn’t do it again because as I’ve got older I’ve gotten more scared if I’m honest.”

Four family friends and Ben’s physio will be completing the skydive on Saturday (May 8), so far the team have raised over £2,100 for Ben.

In previous years, strangers have contacted Mikayla on Facebook to organise a skydive to raise money for Ben.

Mikayla said: “How incredible is it that someone wants to help our son reach his full potential and lead an independent life one day? I find it really selfless and incredible that they want to do that.

“Every event I always get up to talk because I feel like it is really important for people to understand on a personal level how this affects us and how their fundraising helps us, but every time I just cry.”

Mikayla and her family have held five black-tie balls in order to raise money for the treatment. In February 2020, they held a Valentines Day ball which was the first event Ben was able to walk in to and dance with other guests.

This year, coronavirus restrictions allowing, the ball will be held on July 17 at the Casa Hotel in Yateley. As well as raising money for Ben, some of the proceeds will also go towards Mind, a mental health charity.

After a tough year, the family feel that mental health is more important than ever.

Ben’s dad, Jay a martial arts instructor, was diagnosed with cancer and has been furloughed for over a year.

Makayla said: “Since then his mental health hasn’t been great and it did take a dive, so we feel mental health is an important thing, especially this year. We are hoping to hold the ball, as usual, we usually have around 100 guests and raise around £5,000.”

More information about this ball in July can be found online here.

To donate money to the skydiving team, information can be found here.

People can follow Ben’s progress social media via Facebook and Instagram.