Family fund-raises to help Charlie have some independence

Natalie Szpakowicz-Cook isn’t asking much. She just wants to help her son Charlie feed himself and get the chance to go on a family bike ride with his brothers for the first time.

“I just want Charlie to have some independence,” says mother-of-three Natalie.

Charlie, nine, was diagnosed with quadriplegic cerebral palsy at just four months old after suffering a number of seizures.

“I don’t think we will ever know what caused Charlie’s cerebral palsy,” says Natalie.

“I had felt reduced movement for about a month before he was born and though I was nearly full term Charlie only weighed 4lbs 10 oz and they found that the placenta hadn’t being doing the job it should have been.”

At first Charlie had to be tube-fed but eventually Natalie and husband Simon were able to take him home, only to have to rush back when he was four weeks old when he suffered a chest infection.

“While we were in hospital they noticed his arm wasn’t right and they diagnosed him with Erb’s palsy.”

Erb’s palsy is paralysis of the arm caused by damage to the nerves at birth.

But when Charlie was four months old he stopped breathing while Natalie and Simon were out for the day,

“My husband pulled him out
of his buggy and tried to resuscitate him. We were so lucky that some passers by were an A&E registrar and a nurse. They saved his life.”

Charlie was transferred to Sheffield Children Hospital where an ECG and MRI scan revealed he was suffering from West Syndrome – a severe form of epilepsy.

Medication now helps to control the seizures but Charlie has been left severely disabled.

“They told me that he would never smile again or laugh which is heartbreaking.”

But Natalie was determined that her little boy would achieve his full potential.

“You do go through a grieving process and can only see the things that Charlie can’t do. But then when his brother William came along I was feeling in a better state of mind and I started to look at all the things Charlie could do rather than what he couldn’t.

“We never gave up on him no matter how hard it got.”

By the age of two Charlie was recognising colours and his mother says he has come on “leaps and bounds”.

The first thing you notice about Charlie is his beaming smile – something doctors said he would never be able to do.

“He has a wicked sense of humour and is really clever, but above all Charlie is the most caring little boy given what he has to go through. He’s always concerned for his family and his friends at school and has an amazing memory, too.”

Although cognitively Charlie is fine, he has a lot of physical challenges and has undergone numerous operations in his nine years.

He has no use of his legs and will never walk, but has a little use of his arms which means that he can use an iPad.

Although Natalie is Charlie’s full-time carer as well as being mother to William, seven, Joseph, five, and two-year-old Oliver, her aim is to give him as much independence as possible.

His family are now raising funds to buy a state-of-the-art piece of equipment to allow Charlie to feed himself and an adapted disabled bike to allow him to go on family bike rides for the first time.

“At his special school they have a Neater Eater which means that Charlie can feed himself. The satisfaction, happiness and independence brought him and us to watch him do this was beyond words,” says Natalie, from Bawtry, near Doncaster.

Using a touch screen, Charlie can operate a robotic arm which has a spoon attached, giving him the ability to feed himself.

“It will mean that we can all sit down as a family and eat meals together which I think is very important,” says Natalie,.

“It will also give Charlie some much-needed independence as he gets older and wants to do more things for himself.”

It means he will be able to eat his favourite food, chicken tikka masala, himself.

“I ate a lot of curries when I was pregnant with Charlie and I think that’s why he loves it so much.”

But the Neater Eater costs more than £5,000 and although Natalie applied for funding it was not forthcoming and so they launched a fund-raising campaign which has already received support from the local Lions club and Bawtry Retail Association.

She also wants to try to buy Charlie a special bike, which again will give him much-needed independence. Again the council declined to fund the bike, which would cost in excess of £3,000.

“My husband is a big bike rider and William has a bike, Joseph will be able to ride soon and Oliver has a little balance bike.

“To be able to go out on bike rides and picnics as a family together will be fantastic.

“At the moment Charlie has to stay with my mum, I just want him to be able to do ordinary, family things.

“He is also a really big thrill-seeker and loves speed. He enjoys fairground and theme park rides as well as sports cars.

“Both pieces of equipment would last into adulthood so would give many years of happiness and independence for Charlie.”

To make a donation visit www.justgiving.com/crowdfunding/charliesindependence