Family in £23k fundraising mission for happy boy, 5, with rare condition

The family of a happy, smiley Lincoln boy are facing a £23,000 fundraising battle to adapt their home to improve his quality of life.

Matthew Chapman, five, was diagnosed with Infantile Neuroaxonal Dystrophy in 2018, which primarily affects the nervous system.

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Matthew and his mum Victoria. Photo: Steve Smailes for The Lincolnite

Matthew is currently sleeping in the kitchen due to issues around door widths and wheelchair access, making it difficult for him to get in and out of certain rooms in the house.

For bathing, his parents need to carry him up the stairs to a small bathroom.

Matthew currently sleeps in the kitchen. Photo: Steve Smailes for The Lincolnite

Matthew being hoisted into his bed in the kitchen by one of his carers. Photo: Steve Smailes for The Lincolnite

Mum Victoria, 35, dad Colin, 39, and little brother William, two are determined to make Matthew’s quality of life more comfortable and less stressful for however much time is remaining to him, but it comes at a cost.

If they can raise the funds for an extension, it would mean that Matthew gets his own bedroom and wet room.

To build a single storey extension at the back of the house, in place of the conservatory, will cost £53,000.

Access is difficult due to the door widths. Photo: Steve Smailes for The Lincolnite

Matthew’s parents and carers currently have to carry him upstairs to a small bathroom. Photo: Steve Smailes for The Lincolnite

The living room. Photo: Steve Smailes for The Lincolnite

Where the proposed extension would go. Photo: Steve Smailes for The Lincolnite

Photo: Steve Smailes for The Lincolnite

It has already been approved through the disabled facilities grant from the City of Lincoln Council. However, the maximum grant they can award them is £30,000, so the family need to raise the remaining £23,000 on their own.

A GoFundMe page was set up, which at the time of writing has raised £2,000. Further funds have been raised through the Matthew Chapman appeal, including £887 from a raffle by a walking football team in Sleaford.

The Chapman family.

Mum Victoria, who is a Community Support Manager for GLL Better, told The Lincolnite: “Matthew is such a happy boy. He loves interacting with people and he loves the simple things in life such as songs, bubbles, being outside.

“You look at Matthew and you don’t think there’s anything majorly wrong. He looks like a normal boy but in a wheelchair….for him it would increase his quality of life no end.”

Daily struggles with Infantile Neuroaxonal Dystrophy

Infantile Neuroaxonal Dystrophy primarily affects the nervous system. It is a terminal condition as it slowly makes the body weaker and daily functions become so regressed it cannot sustain life. The prognosis is between 5-10 years.

Matthew became very poorly in October 2018 with severe chest infections and had a collapsed airway. Matthew’s mother Victoria said the “world pretty much changed for us from that point onwards” after the official diagnosis.

Matthew can’t move or eat independently. He can vocalise, but he can’t talk and all his personal care and feeding needs done for him. He remains positive as a happy boy who loves adult interaction, but the situation can often be a real struggle for his family.

Matthew has a great bond with his carers including Edgars Rezanovs. Photo: Steve Smailes for The Lincolnite

Victoria said: “We’ve fought for Matthew for such a long time. We’re having to face the prospect of losing our first child but to do this for him to have his own space would give him such a better quality of life.

“He’s stayed in a hospice before, he goes to St Andy’s Hospice in Grimsby for respite care because he is a palliative case. He goes as and when they’ve got availability.

“He had his first respite stay in May and he slept, he was so much more relaxed because he had his own room and everything there and it just made such an impact on us to think right we’ve got to get this done because we can see the benefit.”

Carers & brotherly bond

Matthew, who attends St Francis Special School, has two carers – Edgars Rezanovs and Emily Purkis – for 27 hours a week from Continuing Health Care with the provider AMG.

Victoria added: “William has got such a great bond with his brother. He’s loving and he’s almost turned into a little carer himself. He knows Matthew’s routine, he knows what he likes and he brings him things.”

Matthew and his brother William. Photo: Steve Smailes for The Lincolnite

Raising awareness

Matthew’s parents Victoria and Colin are keen to raise awareness about the rare condition.

She said: “It’s a horrible condition to think that you’ve got a perfectly normal healthy child and then all of a sudden it to just be slowly ebbed away is horrendous.

Matthew, carer Edgars and his mother Victoria. Photo: Steve Smailes for The Lincolnite

“We would like people to get in touch. Reading about the condition after Matthew got the diagnosis, it was like reading about him, so I would just say there is help out there.”

Any parents wishing to contact Victoria can do so via the Matthew Chapman Appeal or by emailing [email protected]