Marni Smyth has been forced to launch a crowdfunding campaign for a vital wheelchair to keep her mobile and pain free. Catherine Scott reports.
Marni Smyth is like any other student. She loves socialising with her friends and studying hard at university with the aim of becoming a lecturer.
The difference with Marni, however, is that she needs 24-hour care and relies on a special wheelchair to keep her pain-free and give her a tiny bit of independence. Without the chair the 24-year-old would be confined to bed, unable to work and in constant pain.
Marni has spinal muscular atrophy type 2, a degenerative neuromuscular condition.
“Having SMA means that I cannot bear weight at all and I need 24-hour care to help me with every aspect of life. A power chair gives me the tiniest bit of independence to be able to move around and reposition to prevent pain and pressure sores,” explains the PhD Art and Design student from Huddersfield.
“People see me out with friends, doing well at uni and generally leading a pretty good life. However, all of this is thanks to having a wheelchair that meets all my needs.”
Marni was diagnosed with the condition at 18 months old and has had a life of hospital admission and struggled.
“My parents are amazing, They have always been determined that I should experience the same things as other children, and have always concentrated on what I can achieve. The only real difference as that any sleepovers had to be at my house.”
From the age of ten Marni had a specialist electric wheelchair with a riser which meant she could alter the height of the wheelchair to allow her to sit at a normal table with her family and schoolmates.
But her current wheelchair is now in desperate need of replacement.
“My current chair is now eight years old and is slowly breaking, the arm rests have holes in them, the buttons aren’t working as well as they should, and the leg rest motor has completely stopped working.
“Due to the leg rest motor not working, I am unable to relieve back pain, therefore it is imperative that I get a new chair ASAP.”
However, Marni is now classed as an adult and so the funding available is far more limited.
“After having an assessment, NHS Wheelchair Services admitted that they could not provide a suitable wheelchair as they can not provide one with the necessary features that are imperative to me being able to use a chair. They also no longer provide vouchers towards private chairs, so this means I have to fully fund it myself.
“This is something I need, not want.
“I am unable to shuffle like other people and therefore quickly end up in pain if I don’t have the specialist chair that does it for me.”
Marni, who lives in Marsden with 24 hours care, has trialled a few chairs but has decided on the Precision Rehab Piccolino by Paravan as it has every feature she needs. The features include back rest recline, tilt in space, riser, automatic leg rest extension and rise and fall, plus many more.
But the chair costs £22,190.40 – more than Marni’s car cost.
“I am applying to various charities for grants towards this, however I can not solely rely on charity grants.”
She has now launched a crowdfunding campaign in a bid to raise the money necessary to keep her mobile.
“All I want is to be able to do the things other 24-year-olds do, and to complete my studies so that I can work and give something back to society rather than relying totally on it.”
Marni is also campaigning for better toilet facilities for people with disabilities.
“I’d need a hoist and plinth to get changed on, and they just weren’t available.”
She took the difficult decision three years ago to have surgery to have a suprapubic catheter fitted which means she doesn’t need to get out of her chair to go to the toilet.
“I would dehydrate myself so that I didn’t need to go to the loo but that really started to impact on my health. My hair started to fall out and I felt terrible. The only thing open to me was to have surgery.
She is now part of a campaigning group called Changing Places which is lobbying for more toilets that people like Marni can use.
She says she knows others who have also had the operation, and it has “completely changed my life”.
Marni says she “wouldn’t change the catheter for the world”, but still questions why her problems got to a stage at which she felt such an operation was necessary.
“I kind of wish I didn’t have to have it in the first place, if the facilities were there,” she says.
An estimated quarter of a million people in the UK require such facilities, but there are currently only about a thousand available for public use.
A recent government committee recommended these toilets be made compulsory in large buildings that serve the public, but no legislation has been put in place to make that happen.
And Marni says even where there are the special toilets they tend to be only open during the day.
“Trinity Leeds has recently had one fitted which is brilliant, but it closes when the centre closes which really doesn’t help people who are on a night out with friends.
“I was in Brighton recently and there is one there but it closed at 5pm – then what?”
Marni is desperate to lead as independent life as possible, a challenge when she has such complex needs.
“I don’t want to be disabled and I didn’t ask to be, but this is life for me and so I have to get on with it. I don’t think I am asking for too much.”
Facts about the condition
Spinal muscular atrophy (SMA) is a genetic condition that makes the muscles weaker and causes problems with movement.
Typical symptoms include: floppy or weak arms and legs, movement problems – such as difficulty sitting up, crawling or walking, twitching or shaking muscles, bone and joint problems – such as an unusually curved spine (scoliosis, swallowing problems, breathing difficulties.
There are different ty pe of SMA and babies with type 1 rarely survive beyond the first few years of life. Most children with type 2 survive into adulthood and can live long, fulfilling live.
To support Marni, visit www.gofundme.com/maintain-marnis-mobility