Laigan is unable to walk due to having Spinal Muscular Atrophy (SMA) Type 1, which causes progressive muscle weakness resulting in movement loss, breathing, and swallowing difficulties – and is the same condition recently confirmed for the twins of Jesy Nelson of Little Mix fame.
Although he used powered wheelchairs when he was younger, Laigan had been left with a basic heavy manual wheelchair after his local wheelchair services went into administration – until Newlife was able to step in and provide him with the powered wheelchair he needed.
Laigan’s mum, Nataleigh, raised concerns about his “ragdoll‑like” muscle weakness for six months before a locum GP recognised the severity of his condition when he was 11 months old and sent him to hospital where the rare genetic condition was diagnosed.
At the time, SMA was fatal before the age of two in 95 per cent of those diagnosed. But the arrival of the treatment Spinraza on the NHS in 2019 was able to halt the disease’s progression – but it isn’t a cure and couldn’t reverse the muscle loss Laigan had already experienced.
As he grew, specialist powered chairs allowed him to stay mobile, including one with a bespoke seat to support a severe 96‑degree spinal curve. Following surgery to help correct this last year, that chair no longer fit him – but the only replacement immediately offered by his local wheelchair services, NRS, was a bulky manual wheelchair, which completely took away his independence.
While waiting for something more suitable to be provided by NRS it went into administration, leaving the family stranded, until they tuned to Newlife, which funded a new powered wheelchair suited to his needs. Now Nataleigh says the equipment has not only restored her son’s mobility but also brought back his smile.
Not having the right wheelchair removed all his independence and he really struggled. He got very down about having to constantly ask for people to move him. He struggled to spend time with friends without a parent or adult supervising him and wheeling him around.
But now because, because of this powered wheelchair he can do all those things he wanted to.
I didn’t think the first day of school would happen, but now he’ll go to high school this year, it’s mind-blowing. He’s still so vulnerable, but his powered wheelchair is his shield.
nataleigh, laigan’s mum
Now Laigan is able to join in games with his brother Theo, aged six, and sisters Lola, 14, and Lenia aged nine – as well as their dogs, Rowley and Russo. He has also joined a local choir too, which he loves, along with the simple pleasure of playing games with his friends in the playground.
One thing I really wanted to do was walk home from school with my friends instead of being picked up and taken home – and now I can do that! I love my new wheelchair.
laigan
Nataleigh is now calling for SMA to be added to the routine newborn heel prick test, arguing that early treatment can save lives and significantly reduce long‑term NHS costs.
It would be very cheap to add in the tests they already do, it would save other parents from going through this heartache as the treatment could be administered before symptoms start, saving the NHS money later on.
“It’s the difference between living an able life or spending a lifetime in a wheelchair.
nataleigh, laigan’s mum