Life Video

By Becca Husselbee


A mum was left overjoyed when her four-year-old daughter took her first steps unaided after doctors told her that her newborn would not survive another half an hour.

Little Lilac Jackson was born prematurely at 34-weeks and contracting Sepsis in the womb which lead to her being diagnosed with Spastic Diplegic Cerebral Palsy at 18-months old, mostly affecting her legs and her ability to walk.

Pic from Caters News

Now her parents, Leila, 35 and Barry, 38, from Bishops Cleeve, Cheltenham, are doing all they can to raise £60,000 for ground-breaking surgery that will mean little Lilac will lead be able to walk without the use of a frame and lead a normal life.

The video captures Lilac, who is full of determination, taking several steps towards her big sister, Lulu, 12, as Mum, Leila, shouts out her name in sheer joy.

Leila said: “The operation is fairly new in the UK although it has been carried out in America for around 30 years.

“It’s a very complex procedure where doctors will test and cut nerve endings in her spine that are causing spastic tightness in her legs. It can take between six and seven hours and they only have one chance, there is no repeating the operation.

Pic from Caters News

“Lilac currently walks on her tiptoes because of her tight muscles and can’t put her feet flat on the floor.

“It is already causing her hips to become unstable and overtime her bones will also become deformed. Without the operation, she will be in a wheelchair in the next few years.

“We would move mountains for our daughter, she is our sunshine, and without this operation, I’m scared she will become tired of life, I don’t want her to lose that sunshine.”

Doctors rushed critically ill, baby Lilac, to Kings Cross hospital back in October 2014, and placed her on a life support machine, when her devastated parents were told that she would be unlikely to survive another half an hour. 

Pic from Caters News

The plucky youngster defied the odds and was discharged two-weeks later to recover at home but it wasn’t until Leila noticed that her development was delayed that Lilac was referred to a physiotherapist.

Leila said: “At 12-months-old she struggled to sit up on her own and wasn’t crawling.

“When we were referred, we knew something wasn’t right and she was eventually diagnosed after an MRI scan which revealed she had a brain injury.

“At first it felt like such a dark time. It was a complete blow to us when doctors said she would never walk.

“I could only think of the things she would never be able to do, she would never be able to go to a dance class like her older sister, at first you think why has this happened to us?

“It was so surreal.”

Pic from Caters News

The couple, who both work in recruiting, are now trying to raise £60,000 so Lilac can have the operation at one of only five hospitals in the UK where the procedure is possible.

The family, including youngest son, two-year-old Leo, hope that Lilac can meet the strict criteria that means the operation can go ahead at Bristol Royal Hospital for Children.

Leila said: “It’s not a matter of ‘if’ she will have the operation, it is ‘when’.

“If we are unable to meet the criteria here in the UK we have applied to go to the US but that would cost around £90,000 with 18-months of rehabilitation afterward.

“The operation will mean that Lilac can lead a normal life, where she can walk, dance, ride a bike and even learn to drive when she gets older.

“We have raised £31,000 since October, last year, and the support has been overwhelming.

“Everyone who meets Lilac falls in love with her, she is bright and funny, and now she has found her voice she has lots to say.

“She’s been a fighter since the day she was born.”

If you would like to make a donation please follow this link to Lilac’s fundraising page:

https://www.justgiving.com/campaigns/charity/just4children/lilacslittlelegs