Predicted to pass his business management degree with first class honours, Maxwell McKnight is an impressive young man.

Diagnosed with spinal muscular atrophy (SMA) aged two - the same muscle-wasting disease as the twins of former Little Mix star Jesy Nelson - in 2024, he became the first wheelchair user to climb Snowdon, raising £50,000 for charity SMA UK.

He says: “It was probably one of the hardest but most thrilling things I’ve ever done.”

Now, in a powerful video message to Jesy, posted on social media, Maxwell, 21, of St Neots, Cambridgeshire, says: “I promise there is light at the end of the tunnel.

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“It is a hard road ahead as a wheelchair user, having all of these access needs, losing strength over time, all of these barriers. But a hard life isn’t necessarily a bad life. Living with a disability is all about mindset. In this age a child with SMA can do anything they want, to an extent. I drive, I’m a board member, I’m in a relationship, I’m at university. The road ahead will be steep, but it’s going to be absolutely amazing and full of meaning.”

Maxwell’s parents. Joanne and Paul, both 53, were told he would die in childhood. He says, proudly: “I’m 21 and have achieved so much.” But he backs our campaign for SMA to be added to the NHS newborn heel prick test - something he has been campaigning for, with charity SMA UK.

He says: “It is brilliant the Mirror papers have launched their SMA campaign and are putting pressure on the Government. It’s essential that the heel prick test includes screening for SMA - newborn screening could save thousands of lives. The sooner you can get treatment, the more muscle you can save, the better the outcome for the child.”

Claiming that the £5 test can cost as little as 36p when bought in bulk, Maxwell continues: “Adding SMA screening to the heel prick test has the power to completely change the lives of children being born now. It’s such an easy thing to do and only costs 36p per child. Living with SMA is expensive - a wheelchair costs £20,000, house adaptations cost £100,000 – you can save all of that for just 36p.”

Diagnosed after his grandparents spotted that he was missing key milestones, Maxwell - who has been dating his girlfriend, former schoolfriend Daisy Hall for six years - has two dislocated hips. His lungs and throat are also affected by SMA and he requires a special sleeping machine to help him breathe at night, which pumps air into his lungs as he stops breathing while asleep and a cough assist machine, as a simple cold can be very serious.

Maxwell has an electric bed, a therapy bed, two wet rooms with a hoist, an adapted toilet and a lift, so he can get to his room. He needs 24/7 care, takes daily medication to stop his nerves degenerating and has regular blood tests and checkups. He says: “Being disabled takes more planning, but I can do anything that an able-bodied person can do. Whatever I want to do, I just go for it, I’ve done this all my life.”

Praising his parents for their support, he adds: “My mum was my carer until I turned 18. We had hundreds of appointments and she used to have to wake me up five times in the night to roll me. When I was 18 I employed my first full time carer - it meant that my mum could become my mum again. Jesy has spoken about wishing she could be a mum - and not a carer to her twins – I get this. But my mum and I are incredibly close because of everything.”

He also praises his sister Yasmin, 19, saying: “She has been my rock. She’ll come out with me and my friends and help me to have a social life. She’s made lots of sacrifices.”

A trustee of Caudwell Children, a charity which supports disabled and neurodivergent children, Maxwell continues: ‘I’ve already achieved a lot but I have more big goals for my future. I want to do accessible skiing, accessible paragliding, I want to get 100k followers on Instagram, so I can spread awareness of SMA as far as possible. I want to get a first at university, and be a CEO of a business.’

For more information about Caudwell Children go to https:// www.caudwellchildren.com