A family want to adapt their house for their severely disabled son at a cost equal to the taxpayer picking up the bill to put him into residential care for just 13 weeks.

But Charlie Russell’s parents don’t want handouts and are battling to find the money to keep their boy at home – for good.

Charlie, of Hartley Bottom Road, Longfield, has had a difficult start to life.

Born prematurely, he needed resuscitating immediately – but there were complications and he suffered two brain haemorrhages. He also caught meningitis and pneumonia.

His family’s heartache continued when the 12-year-old was diagnosed with spastic quadriplegia – the most severe form of cerebral palsy, which renders him unable to walk or even support his own head.

Registered blind and epileptic, Charlie has daily seizures and also cannot effectively regulate his own body temperature.

He is unable to talk and must be fed through a tube in his stomach for about six hours a day.

His mum Jenny Watts is his full-time carer but Charlie is outgrowing his equipment and the 36-year-old can no longer carry her son up the stairs to bathe him or put him to bed.

But even when Charlie is carried up by his father Scott, it hurts because he’s had two pelvic operations.

Jenny has been quoted £1,200 a day to place Charlie in a residential care home to cater for his needs, which would be paid for by the taxpayer.

But Jenny said: “Charlie is our son and we should be caring for him – we don’t want to put him in a home.”

The family have already spent money on their house to make it accessible for Charlie and his large wheelchair.

But Jenny, husband Scott Russell and two other sons, Bradley, 18, and Danny, 16, now need to raise £110,000 to build a new bedroom and bathroom for Charlie on the ground floor, as well as a bedroom next door to him for Scott and Jenny.

Jenny said: “At night Charlie’s tongue often slips back and obstructs his airways and we have to be able to help him quickly.

“Social services have told us we should put him in the lounge, but it’s not big enough for all his equipment.

“They’ve also suggested moving but we can’t afford to.”

Engineer Scott, 40, added: “Besides, how often do you find five-bedroomed bungalows? Wherever we moved we would have to do work to make it suitable for Charlie.

“We also don’t want to leave. Our neighbours are incredibly supportive. On Christmas day a few years ago Charlie fell unconscious and our neighbour performed CPR until the ambulance arrived. She kept him alive.”

Charlie also goes to school close by at Milestone Academy in Ash Road, New Ash Green, for children with special educational needs.

With the help of long-term family friend Shaun Ramage, the family are hoping to raise the funds with various charity events.

Charlie’s conditions are life-limiting but doctors are unable to give an estimated life expectancy for him.

Jenny added: “Charlie responds to certain voices and touch and he is a really happy kid. But the older he gets, the harder it gets for us to care for him.”

Jenny and Scott have been applying for a disabled facilities grant from Dartford council for seven years, but so far have been unsuccessful.

The grant is designed to assist with the cost of adapting a home around the needs of a disabled person.

Jenny said: “We’ve had issues because we don’t own the house, my father does, so the council have said they can’t fund the changes.

“But my father signed and gave his permission on all the application forms so it’s just disappointing.

“It makes me feel uncomfortable asking for money. I feel like we should be able to provide everything for our own son.

"But I just think, if we were to put him in care it would cost the authorities so much more in the long term than it would if they gave us just a bit of financial help now so we could continue caring for Charlie at home.”

Council leader Jeremy Kite (Con) said: “The council is working with the family to overcome some of the obstacles they are having in relation to the grant.

“If the family would like to contact me directly I would be delighted to have a chat with them. I would also be very happy to help with the fundraising.”

Walking over flaming-hot coals is not the easiest way to help raise money, writes Lizzie Massey.

A cake sale or fancy dress would have been a lot less daunting. But who could say no to Charlie?

Family friend Shaun Ramage turned 50 recently and made a “bucket list” which included jumping out of a plane, which he did with Charlie’s dad, Scott, earlier this year and raised £1,000.

But on Saturday it was time for the next task and get our feet toasty at the New Ash Green sports pavilion.

After an hour’s motivational workshop, and no unveiling of any fire walking secrets, it was time.

But to get our adrenaline racing we first had to break a wooden arrow – with our necks.
Placing the rounded-off arrow head at the base of our necks and the end against a wooden board we had to step forward and shatter the arrow.

The shock certainly did the job and all 18 of us raced outside, where the five-foot walkway and a fire-dancer were waiting.

I felt the heat as I drew near the coals and the nerves kicked in. But in just a few hot-potato steps I had done it – I had walked over hot coals.

To celebrate not falling flat on our faces or suffering any burns, a party quickly got in full swing with Strange Day, Torn and children’s band Longfield Rock School performing.

The sponsorship money and donations are still being totted up but about £3,000 was raised for Charlie on the night.

Mum Jenny said: “All the support we’ve had from people is overwhelming and we would just like to say thank you to everybody who took part and donated. Also to Soulfire for the fire walk and to the team at the sports pavilion, who let us have the hall for free.

“We won’t give up and will do anything we can to provide for Charlie for as long as we can.”
If you would like to help Charlie, get involved in any fund raisers or donate, visit the Facebook page: “Lets Help Charlie :)”

Shaun Ramage and the family are organising their next fundraiser, a charity ball, for February 15 at the Brands Hatch Thistle Hotel.

A welcome drink, three-course meal, an after-party with DJ and raffle are included in the £40 ticket price.

The group are still compiling the raffle prizes so if you can help, or to book tickets, call 07966502135.

The event is adults only.