This heart-warming video shows a brave little girl taking tentative steps with walking sticks – as her family launch an appeal to raise money for a life-saving operation.
Lilac Jackson, three, has spastic diplegia cerebral palsy and needs walking aids to move about.
The furthest distance she has ever covered is just 400 metres – and her average speed is just 0.19mph.
Lilac, of Chletenham, Glos., is “always smiling” and has overcome major health problems including at one point when she was not expected to survive.
Her life could be transformed with an operation unavailable on the NHS, which would give her the chance to run, dance and take part in P.E lessons.
Mum Leila, 35, and husband Barry, 37, say they live for the day they can see their daughter chase after their one-year-old son, Leo and play with sister Lulu, 11.
The Jacksons are trying to raise £80,000 for the surgery, selective dorsal rhizotomy (SDR), to be performed in the US.
Leila said: “When we first got the diagnosis the first thing that really upset me was that Lilac wouldn’t be able to go to ballet lessons when she was three, or wear high heels.
“Once I got past these strange little things, it was the question of where is she going to go to school?’
“We watched her nativity at nursery, and I knew I would blub all the way through it.
“But we went to a fourth birthday party on Saturday and seeing other children dancing and jumping around and she can’t do that, breaks my heart.”
The family have dedicated themselves to raising the cash to pay for the SDR op on Lilac’s spinal cord, which would allow her to walk and experience full independence.
They are hopeful it could be done closer to home, in Bristol, costing £21,000 for the surgery and another £30,000 for physiotherapy, but are raising £80,000 for it to be done in the U.S as a Plan B.
So far £8,225 has been raised and the family will find out in February if the operation could happen in the UK on a self-pay basis.
The cost of the physiotherapy, lasting up to two years, could exceed that of the surgery.
“If we can raise £15,000 by the end of January, we would not be far off being able to book the operation,” Leila said.
“As a parent we have had to fight for everything – there has always had to be a plan B.
“The operation costs £42,000 in America and physio would be another £30,000 – it costs nearly as much as the operation, and you can’t have one without the other.
“Every single penny, and blood sweat and tears, will be well worth it.”
Lilac was born in Princess Royal Hospital in Bromley, south east London, but within 24 hours she was blue-lighted across the city to King’s College Hospital, where she was kept on life support for five days.
Leila recalled: “She was taken straight off me, I didn’t get to hold her. She was one of the bigger babies in the neonatal unit but by far the sickest.
“She wasn’t expected to survive but she must’ve seen some sort of light in there and that light sent her back.
“When you consider how poorly she was, the fact she is here is nothing short of a miracle.
“She loves and she laughs and she’s happy, which is a second miracle.”
Leila’s waters broke at 29 weeks but it was not until the 34th week had passed that she was induced.
And as soon as Lilac was born doctors realised something was not right.
Fortunately her cognitive ability was unaffected and although Lilac’s speech is delayed, her mum is confident it will improve.
And while most parents get fed up of breaking up sibling tiffs, Leila hopes to one day see her daughter able to “give as good as she gets.”
Leila said: “Leo is one – they wind each other up a lot. They love each other dearly but there is always a point where they’re having these little barnies when Leo will grab what’s in her hand and run off, and she can’t run after him.
“We long for the day she can give as good as she gets.
“We went to a fourth birthday party on Saturday and seeing other children dancing and jumping around and she can’t do that, breaks my heart.”
To donate visit https://www.justgiving.com/campaigns/charity/just4children/lilacslittlelegs
