THREE year old Heidi-Lou Decieco has Spastic Quadriplegia Cerebal Palsy, which affects her ability to walk and talk.
Now, the fun loving little girl has been given a reason to smile, after a fundraising night in her home town raised enough money to buy her a specialist buggy.
The fundraiser, which took place at St Bonifaces Social Club two weeks ago, raised an impressive £4,500, exceeding mum Kate’s expectations.
Speaking to Quays News, Kate, 27 said:
Initially when we did the fundraiser we wanted to raise £3500 to buy the specialist buggy for Heidi-Lou. I’m over the moon with the amount that we have raised. It was massively over what we expected.”
As well as being able to purchase the specialist buggy, Heidi-Lou’s parents have also been able to buy other vital equipment for their daughter, using the spare money donated at the fundraiser.
“We had left over money which means we were able to purchase other things as well as another block of private physio. We’ve bought a bean bag called a ‘Pea pod’ which moulds to her shape which cost over £700, as well as a therapy bench (pictured)”, said Kate.
Kate discovered that Heidi-Lou had Spastic Quadriplegia Cerebal Palsy, after she suffered from a foetal maternal haemorrhage prior to Heidi Lou’s premature birth.
The condition means that the youngster, who is also profoundly deaf, can not walk unaided and also struggles to communicate.
“The cerebral palsy means basically she can’t sit, and although she’s just started to roll over, she’s just like a new born baby despite three and a half years old.”
However, Kate is hopeful that the new buggy will greatly improve her daughter’s quality of life. She said:
“The postural support on the new buggy is just fantastic. It sort of holds her in position. It will have an extra cushioning.
“Also the buggy is parental facing, which means she will be able to communicate so much better because when we’re out in busy places it’ll mean we can see her and she can see us. Obviously she is deaf, but she is quite good a lip reading”.
It is estimated that there are around 30,000 children in the UK living with cerebral palsy. The NHS currently offers physiotherapy for children living with the condition.
Despite this, Kate, who is Heidi-Lou’s full time carer, has chosen to pay for private physiotherapy for her daughter, because starting school caused difficulty in meeting the NHS appointment times.
“Starting school meant that we had to pay for private physio because the time that we were supposed to be doing on physio was then put into going to school. Private physio costs us £60 an hour. But without us going private Heidi-Lou would have missed out rapidly.
I don’t blame anyone because the NHS is massively over stretched, but because of the situation that it is, children like my daughter do suffer”.
Now that Heidi-Lou has received some of the specialist items, her mum hopes to continue raising funds to pay for a block of more physiotherapy sessions in the new year.
By: Vicky Barker
Picture Credit: Kate Decieco