‘I won’t be defined by my spine’ – boy with rare condition aims to reach top of wheelchair tennis to play at Wimbledon

A nine-year-old boy with a rare spinal condition is aiming to reach the top of wheelchair tennis to play at Wimbledon in the future, saying he will “not be defined by (his) spine”.

Leo Charlesworth-Mark, who lives in Basingstoke, Hampshire, with his parents, Leanne and Nathaniel, both 32, and his three-year-old sister, Naylee, was born with a rare condition called sacral agenesis where the lower part of his spine is missing, affecting the lower half of his body.

The “determined” youngster was also born with dislocated hips and he lives with reduced knee flexion, meaning he struggles to bend his legs – but he has learned how to use crutches to move which has given him “independence”, while also using a wheelchair for longer distances.

Leanne, a full-time carer for her son, and Nathaniel, a recruitment consultant, took Leo, a “very active boy”, to a Paralympic Talent Open Day in April 2024 where he “absolutely fell in love” with wheelchair tennis.

Leo now trains four times a week with local coaches and a charity club, and he has set his sights on reaching the top of the sport with dreams to play in the Paralympics and at Wimbledon one day.

He has also been inspired by Alfie Hewett, a British professional wheelchair tennis player, who let Leo hold one of his trophies after a Wimbledon win last year.

To help Leo “pursue his dreams”, the family have launched a GoFundMe page for support as the travel expenses, along with fees for coaching and specialist equipment, are costly, and they hope to raise £3,500.

“Be determined, be positive and never give up,” Leo told PA Real Life.

“Tennis makes me feel alive and special, I’m really competitive and I really want to win.

“I want to play in the Paralympics and win Wimbledon, and be number one in the world.

“I’m not going to be defined by my spine.”

Leanne said she and Nathaniel first learned of Leo’s condition during her 20-week pregnancy scan.

“We were told he wouldn’t have any quality of life, but we said to ourselves, ‘we’re going to love our baby no matter what’,” Leanne said.

Leo was born with sacral agenesis, where part or all of the sacrum, the lower part of the spine, is missing – which impacts Leo’s ability to use the lower half of his body.

He was also born with dislocated hips, although this does not currently cause him any pain, and he lives with reduced knee flexion where he struggles to bend his legs.

Leanne said the condition causes Leo to suffer with “a lot of pain” in his knees.

“He gets a lot of knee pain, especially during the night or if he’s had a very active day – he’s a very active boy anyway and he uses his crutches often,” Leanne said.

“He does end up crying sometimes with it, and he has medicine and massages to help.”

Leo was also born with club foot, also known as talipes, where the feet turn in and under, and he had three operations at ages two, three and six to help straighten and flatten his feet.

Having previously lived in London, the family were supported by Chelsea and Westminster Hospital and Great Ormond Street Hospital for Children, as well as a charity called Small Steps, and Leo began to “build up his strength” and walk with aids from a young age.

He first used a frame and walking sticks, but ever since Leanne’s father, John Golding, purchased a set of crutches for Leo in 2021, he has “never looked back”.

“It was the best thing ever as he has adapted and learned to walk with them, it’s given him independence,” Leanne said.

Now, Leo will aim to use his crutches as much as he can while also using a wheelchair for longer distances.

While Leo is determined in the face of his condition, he can become upset about being different from those around him.

“When he became more aware of himself and other people, he used to say, ‘why can’t I walk?’, or ‘why do I have to have this condition?’,” Leanne said.

“For him, he has needed to accept the way he is and he has done that magnificently, but he still gets upset from time to time.”

Leanne said her son has always been “competitive” and “determined” in sports, playing football with his father “in his own sort of way” while using his crutches.

Leo “absolutely fell in love” with wheelchair tennis, however, after the family attended a Paralympic Talent Open Day in April 2024, where he could try out different Paralympic sports.

Now Leo attends practice sessions for wheelchair tennis four times a week, training with a local club as well as the Queen’s Club Foundation, where he plays on the inclusive player pathway.

He is also a part of the LTA Regional Talent Programme, where he hopes to join their junior wheelchair tennis team in the near future.

Leo has also taken inspiration from Alfie Hewett, a British professional wheelchair tennis player who has won a series of major titles.

Leanne said the player personally invited the family to watch him compete at Wimbledon in 2024, where he won the men’s wheelchair singles and doubles titles.

“He actually came over to Leo and let him hold his trophy, and said, ‘this could be yours one day’, which meant everything for Leo,” Leanne said.

She added: “Tennis has given him something priceless, it’s a sense of freedom, a place to compete and a space to strive – it’s more than just a sport for him.”

At a wheelchair tennis competition in Wales in April this year, Leo came first and won a gold medal.

“He inspires me everyday, and he hopes to inspire other people with disabilities to go for their dreams and never give up,” Leanne said.

Nathaniel added: “I’m so proud of all the challenges Leo has overcome and I can’t wait to see what the future holds for him.”

The family have launched the GoFundMe page to help them support Leo in reaching the top of wheelchair tennis, raising more than £2,000 so far.

“It’s one of the most expensive sports – there’s lots of travel expenses, lots of one-on-one coaching time and specialist equipment,” Leanne explained.

“Any support will really help him to go on and pursue his dreams.”

For those who have already donated, Leo said: “Thank you so much. It helps me have sessions so I can get better every day, and it helps me to complete my dreams.”

To find out more, visit the fundraising page for Leo here: gofundme.com/f/leo-charlesworthmarks-journey