The parents of a boy with special needs say he has been denied essential equipment by the council.

The Powell family have resorted to fundraising for a £4,000 walker for their son after they asked Medway Council for the money and were turned down.

Tomas Powell, 11, has Pelizaeus Merzbacher disease, a rare condition that affects 1 in 500,000 boys which means he has complex needs and limited mobility and requires a wheelchair or a walker.

He uses the walker at home and at school to get around and exercise, and Tomas’ mum, Emma Powell, 37, says he’s never happier than when he gets out to the park or is walking on errands for his class at school.

Following a medical examination in September last year, physios recommended Tomas get a larger walker as he’d outgrown the one he’d had since he was seven.

The two main issues with his current walker are that Tomas has grown too tall, meaning his arms are now at risk of getting caught in the spokes of the walker’s wheels, and the headrest doesn’t reach high enough to support his head properly.

Without a properly proportioned walker, Tomas will have to spend more time in his wheelchair, meaning he can’t exercise to strengthen his muscles, and risks displacing his hips. It would also mean a loss of independence and social interaction which the walker gives him.

Emma contacted Medway Council’s Equipment Commission (MCEC) about buying the new walker, which costs just under £4,000. It was a procedure she’d been through previously for other equipment for Tomas which had proved a success.

However, this time the authority has repeatedly refused to help and the Powells have turned to their local community to fundraise.

Emma says MCEC rejected the application on the basis of where the walker would be kept, as it should be for Tomas’ exclusive personal use.

Tomas attends Abbey Court School in Strood, a special school for pupils aged 3-19 with severe and profound learning difficulties.

He gets the bus from his home in Rainham, however, the bus the council provides for special needs children can’t accommodate the new walker.

Emma and her husband Matt, 39, both work full time and also need to take Tomas’ younger sister Paisley to school in Upchurch and rely on the bus to help Tomas get to and from school.

They suggested they could drop off the walker at school on Mondays, leave it there during the week and pick it up on Fridays for Tomas to use at the weekend. However, the council said this was unacceptable.

Emma then asked the council if it would fund the walker if it was kept at home until the bus could accommodate it, and then it would go to and from school every day as the authority wished.

But the council also denied this request. Emma claims the authority said it did not believe Emma would do this and that the Powells would leave the walker at school during the week.

Emma says the decision is “baffling” and she feels the council won’t believe her, no matter what she says.

She said: “No matter what options we were coming up with, we were told no each time. It's frustrating.

“I understand money is king but when it's the joy and he's restricted to a chair, if he doesn't have a walker that fully supports him, he can't walk.

“He absolutely loves his walker and the school says how much it makes a difference to his day and without that, it's not nice.”

She added throughout the application process she didn't meet anyone from the council’s deciding panel, so does not know who made the decision - or whether they have medical experience - about her son being refused the equipment.

The council says the initial request was made primarily for educational needs and so the cost should be covered by Tomas’ education, health and care plan (EHCP) through the school.

However, Emma says after being denied by Medway Council she asked the school if it could fund the walker and it said since it was a piece of health equipment, it was the authority’s responsibility.

The council also said it could provide the walker if it was specified in Tomas’ EHCP, but wouldn’t until the transport arrangements were agreed.

Emma appealed through the Rainham Community Facebook group, asking for support for a sponsored walk to raise half the total cost, which is almost £4,000.

She said she and her husband would pay for the other half themselves but users asked for a fundraiser to be started, and within 24 hours the whole £4,000 had been raised.

She said: “We were out for a walk one day and thinking of a way to get him his walker that he needs and I was like, “Oh Tomas, we could do a sponsored walk” and if he did a lap of the park I'd do 5k at the gym on the treadmill.

“We shared it on our local Rainham Facebook page and everyone was like “set up a GoFundMe page” and within 24 hours we had well over what we had hoped for because we were only looking for half. We'd planned to fund the other half ourselves.

"People of Rainham, friends and family have made sure he can have his new walker. He's so lucky. They've really stepped in where the council should have.”

The Powells then asked the council if the authority could help with the walker’s maintenance costs but the authority said it could only provide servicing and maintenance for equipment purchased by the council.

Since the fundraiser, Emma has been contacted by Medway’s deputy leader Cllr Teresa Murray (Lab), who is responsible for health policy in the Towns, who has promised to meet to discuss the situation.

However, Emma says she’s not alone in having faced difficulties trying to get equipment and support from the council.

She said: “We're not the only family having to go through this. We're lucky that we live in Rainham, with such a great community, but not everybody's as lucky as that so something has to change.

“And if they're expecting more people to fund their own equipment then the council have to try and support them with the aftercare, so the children get the best of the equipment when they are using it.”

Thanks to their community, Tomas’ new walker has been fully funded and the Powells are in the process of ordering it and they say any additional funds beyond what they need will be used to help other children with Tomas’ condition.

They’ll do this through the Triumph for Tomas charity they started in 2014 which aims to raise awareness and fund research into the disease.

A Medway Council spokesperson said: “Our teams work hard to support Medway’s residents as best as they can, with around 1,200 people supported with equipment they need each month.

“We will continue to work with the family, prescriber and school to ensure the child's needs are met, including when changes occur, where we are able to.”

Cllr Murray said: “I have invited Tomas’ mum to meet me and discuss the situation because we value the role that parents and carers have in advocating for their loved ones.

“We do have financial constraints and budget allocation rules but it is important that we work together to secure the very best we can to help SEND children in Medway thrive, an aspiration shared by elected councillors and our council staff.”

Abbey Court School was also approached for comment.