Peterborough mother hoping to raise enough money to get her son a new wheelchair says ‘this is no life for a 12-year-old’

Sinead Goldsmith is determined to help her son McKenzie, who was diagnosed with the life limiting condition Duchenne Muscular Dystrophy (DMD) in 2013.

DMD is the most severe type of Muscular Dystrophy and causes weakness in mainly the legs and upper arms. The condition is caused by a ‘faulty’ Duchenne gene and is most commonly found in boys. Girls can carry the gene but are far less likely to develop the same muscle weakness.

This weakness usually starts in early childhood and gradually increases, affecting a person’s ability to walk. From there, most of those affected end up in a wheelchair and typically, from the late teens, the condition can cause complications such as weakening of heart muscles.

Most boys with DMD usually only live to their late teens but some survive into their early 20s.

McKenzie’s diagnosis was particularly heartbreaking as it came in the same week that his father, Alan, who used to run The Lime Tree pub on Paston Lane, was diagnosed with terminal cancer. He tragically lost his battle in 2014.

This year too has been especially hard on the whole Goldsmith family, which also includes McKenzie’s two younger sisters Scarlett (10) and Sophie (9).

Before the Covid-19 pandemic hit, McKenzie was still able to walk but that has since become too difficult and instead he now uses a manual wheelchair. The family were forced to give up their beloved home in September only to find their planning application for a downstairs bedroom and washroom rejected by the local council.

This means that Sinead is left to carry McKenzie up the stairs herself and do the same when he needs to use the toilet or take a bath, all without any kind of hoist. Due to the pandemic, she has taken all of this on herself so as not to risk the health of anyone in the household.

Sinead said: “It’s been really tough with Covid, we’ve already had to cancel a family holiday to Florida and I usually get a lot of support from my mum but she lives with my 87-year-old nan so we have to protect her. My partner Richard is a great help too and McKenzie sees him as a father but we don’t live together at the moment so it is challenging. I also won’t have any carers in, it’s just not worth the risk.

“McKenzie’s condition also leaves us more isolated and less able to get out of the house as it’s harder to push a manual wheelchair and it makes going to the beach almost impossible.

“Every year we normally have a family meet up in Cornwall. Obviously, it is off this year but we hope to be back next year with a wheelchair that will allow McKenzie to get across the sand.”

Getting McKenzie an electric wheelchair would go a long way to giving him his independence back and ease some of the burden from his mum Sinead.

Recently, Mckenzie was due to take part in an NHS powered wheelchair trial but that had to be cancelled due to the lack of a ramp to get it into the house.

She added: “It’s really hard, especially because I wasn’t expecting it so soon. It’s not been easy without my support network and I am someone that suffers from depression and anxiety, sometimes I feel like the worst parent in the world. “Having this wheelchair would give him his independence back. I know not walking has hit him hard and he doesn’t talk to me about it, perhaps because he knows how upset I can get about it.

“What he’s doing at the moment, crawling around the house or being carried by his mum, is no life for a 12-year-old boy. I’m doing all I can to get him support but it’s a struggle with the authorities and I don’t have time on my side. “I’m seeking a solicitor but I’m on the edge of a complete breakdown because of all the pressure and this is the time we should be spending making memories.

“He’s a little soldier though and he never gives up. He’s one of the happiest boys you could ever meet. He loves his cars, you can tell him a type of car and he will tell you everything you could wish to know about it. His dream car is a Lamborghini.”

The estimated cost of an electric wheelchair for McKenzie is £17,000 and Sinead’s aunt Nikki has started a GoFundMe page in support. To donate, click here.