Get involved: send your pictures, video, news and views by texting ECHONEWS to 80360, or email us »
How Danny’s fund helped Lilybet take her first steps back to recovery
1:00pm Tuesday 15th April 2014 in News
FOR any parent, nothing ever quite beats seeing your child taking their first few tentative steps.
For proud mum and dad Danielle and Carl Pittman that moment was all the more unforgettable, as they never knew if their little girl would ever walk again after a serious setback.
Lilybet was 20 months old when the couple were hit by the devastating news she had a medulloblastoma, a form of brain tumour.
Days after surgery to remove the tumour, in November 2012, Lilybet was then diagnosed with the rare condition, posterior fossa syndrome, which robbed her of the ability to crawl, walk, swallow, or even sit up or hold up her arms.
It was a terrible blow for Carl, from Canvey and Danielle, from East Hanningfield.
Danielle said: “We went from having a normal, happy little girl to having a daughter who was severely disabled. It was really difficult. She lost a lot of her basic skills and we were told she would have to re-learn everything – walking, crawling, even sitting up by herself. It was hard, it’s a horrible condition.”
The rare condition affects about 0.08 per cent of children who undergo brain tumour surgery.
It is the same condition which brought down brave Canvey schoolboy Danny Green.
Danny, 11, died in 2012 from a viral infection shortly after being given the all-clear after brain surgery.
His family set up the Danny Green Fund in his memory to help children with the same condition, providing information, support and grants to allow parents to seek treatment.
Lilybet, now three, is one of dozens of children who are benefiting from a new scheme run by the Danny Green Fund and the Benfleet Physiotherapy clinic.
They get physiotherapy and hydrotherapy to help speed their recovery.
As a result of the therapy Lilybet has now taken her first few steps since she was diagnosed with the condition.
Danielle said: “She’s getting stronger all the time. She recently started balancing for a couple of seconds on her own and taking a few steps. There is still a long way to go, but this is massive progress.
“We are so thankful to the Danny Green Fund. We could never have afforded to pay for this treatment on a regular basis, so we are so happy we can now give Lilybet the best chance.
“The condition is so rare and it’s nice to have someone to speak to who understands what we’re going through.”
Lilybet underwent undergo chemotherapy and radiotherapy and still has regular three-month checks to ensure the Grade 4 cancer is not returning.
Benfleet Physiotherapy’s owner Nigel Kimpton is a keen supporter of the Danny Green Fund and the new programme.
As well as offering sessions for children with posterior fossa he donated £1,000 to the charity.
Mr Kimpton said: “It’s extremely rewarding to see the family really happy and overjoyed that, for the first time, Lilybet is starting to get some normality back to her life.
“Since being diagnosed, she hadn’t been able to walk. Now she is taking her first steps and we hope our input has helped make that happen.
“A lot of people think physiotherapy is just dealing with pulled muscles and strains, but there’s so much more to it than that. There’s the neurological side, too. Children with posterior fossa syndrome can often lose their balance, have communication issues or trouble walking, and things such as hydrotherapy can really help. We even do home visits.
“The Danny Green Fund is such a worthy cause and we are only too happy to support them.”
Lilybet and her family have also been receiving support from Havens Hospices during her treatment and by offering respite care to give her parents a welcome break.
For more information on the Danny Green Fund, visit the dannygreenfund.org.uk
Comments are closed on this article.