The mother of an actress who has cerebral palsy has revealed how her daughter’s experience filming for a television series has ’empowered’ her to believe ‘she can do anything’.
Lilac Jackson, four, from Cheltenham, was diagnosed with spastic diplegia cerebral palsy soon after her first birthday, and was told she would likely never walk or talk.
But Lilac, who was born six weeks premature, ‘laughed in the face of the dire odds that were stacked against her’ and is on track to live a ‘fully independent life’ following her spinal surgery in April 2018.
The four-year-old is now a budding actress who is set to star as Charlotte in Channel 4’s upcoming thriller Deadwater Fell, alongside Broadchurch actor David Tennant.
Lilac Jackson (pictured), from Cheltenham, was diagnosed with spastic diplegia cerebral palsy soon after her first birthday
Her mother Leila said the ‘surreal’ experience was all about ’empowering Lilac to believe in herself’ and believe ‘she can do anything’.
She told FEMAIL: ‘Modelling and acting for us has never been about fame and fortune.
‘It has been about empowering Lilac to believe in herself, to believe she can do anything she wants to, that she can take advantage of any opportunity that comes her way.
‘All of her little life, people have tried to pigeonhole her into a box where she won’t do this or can’t do that. She is proving all the doubters wrong, day after day.’
Her mother Leila (pictured with Lilac) was told she would likely never walk, talk and would spend her life in a wheelchair
Leila decided to sign Lilac up with Zebedee Management, which specialises in talent with disabilities, as a way to ‘raise even more awareness’ about her condition.
The actress’ spastic diplegia cerebral palsy causes muscle stiffness in the legs, and makes it difficult for Lilac to move without a wheelchair or a walking stick.
The condition is caused by brain damage during pregnancy or childbirth and it affects one in every 400 babies born in the UK every year.
‘Lilac has always been used to me pushing a camera in her face! I document absolutely everything as a way of documenting her progress,’ Leila said.
‘She is always smiling and a light just beams out of her and people often commented that we should get her into modelling.
Now, Lilac is a budding actress who is set to star as Charlotte in Channel 4’s upcoming thriller Deadwater Fell, alongside Broadchurch actor David Tennant (Pictured on set with co-stars Orla Russell and Felicity Keegan)
Lilac will appear as one of three Kendrick sisters in the show, whose father, Tom, is played by Doctor Who star David
‘As our Lilac’s Little Legs page grew on social media I began to think that if it was something she could do, it would raise even more awareness for all that we campaign for – awareness, acceptance, inclusion and hope!’
Leila sent Lilac’s picture to the agency in February 2019, and soon after, she was featured in Primark’s Toy Story 4 campaign.
‘We didn’t really have any expectation as to what opportunities may or may not come Lilac’s way. We had never done anything like this before,’ the mother-of-three said.
Then, just a few months later, the four-year-old’s agent was in touch again to ask if the family could make their way up to Glasgow to meet the casting director for a major new Channel 4 drama.
Leila said that the ‘minute’ she and Lilac met the team, ‘everything felt right’.
‘You just get a feeling, and we came away knowing Lilac was going to be able to use her platform to represent our community in a way that exceeded anything we could have ever hoped for,’ she said.
Lilac and Leila decided to join Zebedee Management, which specialises in talent with disabilities, as a way to ‘raise even more awareness’ about her condition
‘She was offered the role and it honestly felt like a dream come true.’
Lilac will appear as one of three Kendrick sisters in the show – whose father, Tom, is played by Doctor Who star Tennant.
Leila said the experience ‘did more for Lilac in her ongoing journey to complete independence than we ever thought possible’.
Not only did the role prove to her that ‘she can do anything’, but her speech and language – which had been delayed – ‘improved massively’ on set.
‘Her speech and language, which has been delayed, improved massively, her confidence to trust her own body and ability just blossomed, she was walking better and she was walking further,’ Leila said.
‘She formed some incredible relationships whilst on Deadwater Fell, ones that will last way beyond filming being wrapped. She speaks so fondly of everyone and misses the buzz of being on set.’
The actress’ spastic diplegia cerebral palsy causes muscle stiffness in the legs, and makes it difficult for Lilac to move without a wheelchair or walking stick
Leila, who described days on set as ‘surreal’ and ‘overwhelming’, said she now hopes Lilac will be considered for roles ‘in spite of her disability’ in the future.
She said: ‘My hope for her future is that she is considered for a role in spite of her disability. That perhaps a character is written and disability isn’t even considered – and then they meet Lilac and want her for the role so it is adapted.
‘That would be such huge huge progression for the industry!’
The mother-of-three went on to explain how she hopes Lilac can use her platform to benefit her peers, and ‘breed acceptance’ for people with disabilities.
‘I want the world to see children like my daughter in the same way that they see everyone else. This will breed acceptance that we are all different,’ she said.
‘And with acceptance breeds kindness and tolerance. I want Lilac to be able to use her platform to benefit her peers.
‘We want to be part of the movement towards change meaning that wheelchairs, walking sticks whatever makes a person unique becomes more visible and normalised.’
Late last month, Lilac hit a fantastic milestone and was able to climb the stairs in her home independently for the first time.
Her mother said the four-year-old ‘works hard’ to succeed – and is on track to walk to school by herself on her first day next week.
This was a goal the family set when she underwent life-changing spinal surgery in April 2018.
Leila said: ‘Lilac works harder than any other person we know to achieve much of what everyone else takes for granted.
‘She has learnt more lessons in four years than most learn in a lifetime.
‘But she is set up perfectly to ensure that the future will be a brighter place because of it!’
The family, who run the Lilac’s Little Legs Facebook page to raise awareness about her condition, are currently fundraising on Just Giving so they can ‘adapt and modify’ their garden.
This would ‘create a safe environment for Lilac to participate in daily physiotherapy post-operatively,’ the family wrote on the page.