Lindfield family starts fundraiser for funeral of inspirational fencer with spina bifida

Lani Chester, who passed away on April 8, was born with spina bifida and hydrocephalus but had a passion for sport and always encouraged young people to get involved in it.

She was a member of the GB Paralympic Fencing Squad, and won many gold, silver and bronze medals.

Her mother Helen Ball, 56, said: “I’m very proud of her becoming a GB fencer and for doing all the stuff that she didn’t think she’d be able to do.

“She’s come across to other people that have her condition and made them say ‘right if she can do it I can do it’.”

Helen said that Lani also won medals for swimming.

She said: “When she was little she did a lot of sport.

“She started training for the Paralympics, for the swimming, and then she came out of that because of her medical needs and then she became a fencer for Great Britain.”

Helen, who used to be a nurse, said she loved the fact that Lani raised funds for charity too.

During her life Lani raised thousands for Sasbah – The Sussex Association for Spina Bifida and Hydrocephalus – with sponsored swimming, street collections and appearances at Lindfield Village Fair.

Spina Bifida – with the literal meaning ‘split spine’ – is a permanently disabling birth defect where a baby’s neural tube does not develop or close properly.

Lani endured dozens of operations in her life including her first when she was only three hours old.

In 2012 she lost the use of her legs when she went into a coma after having 22 seizures.

But, despite her health problems and spending a lot of time in hospital, Helen said Lani was very motivated do well in sport and to care for other people.

Helen also nonimated Lani for a Pride of Britain award.

Lani’s sister Emma, writing on the GoFundMe page, said: “Lani gave so much to others and we wanted to give her the send off she deserved.”

She said the costs of the service, which took place at St. Richard’s Chapel, Surrey & Sussex Crematorium, Crawley, on May 18, were over £6,000 and the GoFundMe target is set at £4,300.

To donate visit gofund.me/fc7124ca.