When Life Gives You Lemons: Marni Smyth

About a week ago my friend Suzanne shared a post on her timeline.  It was a Go Fund Me link for her friend Marni.  Marni was fundraising to buy a new powerchair. This chair is going to cost more than her car! Yet without a decent chair Marni is denied access to the life that most of us take for granted.  She is denied independence and the opportunity to pursue a career she loves, for which she trained and is supremely qualified to do.

I contacted Marni and asked her to be interviewed for my WLGYL series.  I want to show the reality of life with a complex disability in the UK.  Everything costs a fortune, even when that thing means the difference between having a fulfilled life or being confined to your room.

How many times have you treated yourself to a new pair of shoes that were just outside your budget, just because?  For Marni, a new chair isn't a luxury, it isn't a treat...

Sadly after having an assessment, NHS Wheelchair Services admitted that they could not provide Marni with a suitable wheelchair as they cannot fund one with the necessary features that she needs.   We faced that situation with Daisy when she needed a self propelling wheelchair that could also recline and provide her with the support she needed, fortunately we were able to have a voucher from the NHS towards part of the cost and a wonderful benefactor helped us with the rest of the cost.  But, Daisy's paediatric, manual chair was quarter of the cost of the chair that Marni needs and what's worse the NHS no longer provide vouchers towards private chairs, so this means she has to fully fund it herself.

Marni Smyth BA (hons), MA  is a highly qualified and talented printed textile designer who just happens to have a disability....

Tell me how life has given you lemons?

I was born with Spinal Muscular Atrophy (SMA) type 2, a degenerative neuromuscular condition. 

And so how have you made lemonade?

I haven’t let it stop me from living my life. SMA is part of me and you have to take the good times with the bad, there’s nothing I can do about it, so I don’t spend my time worrying, I just live my life. I refuse to let my disability define me, it's not who I am.

What have you discovered about yourself (that you maybe didn’t know before)?

As I’ve had my disability from birth, it is hard to pin point what would be different (mentality wise) if I didn’t have SMA. However, I would say that it has made me a really determined person (some might say stubborn!) If I want to do something I won’t take no for an answer.

In hindsight, is there anything you would do differently?

I don’t know really, I think hindsight is a wonderful thing, but at the same time you can learn valuable advice and insight from mistakes that you can pass on to others. One thing I would say is looking back I would have made the decision to have a supra-pubic catheter sooner.  With so few fully equipped and adapted toilet facilities for people with disabilities having a supra-pubic catheter has given me dignity and independence.

What would you consider to be your biggest strength(s)?

I would say my determination to succeed is my biggest strength. (that's obvious Marni, you are educated to Master's level and have not let the SMA be a barrier to achieving your dreams!)

What has been the best advice you have been given?

I wouldn’t say it’s one specific piece of advice, but the support network within the SMA community is priceless, a lot of my success at various stages of my life has been massively helped by advice given by those who have already been through that stage.

How do you want to be remembered?

I want to be remembered as someone who was kind hearted, determined and delightfully sassy!

What advice would you give other people when life gives them lemons?

Don’t let it stop you. Make the best lemonade you can!

Please help me in getting Marni the publicity she needs, not having access to a decent chair means that an already complicated life is made even more complex.  Marni has worked hard to develop her career and independence, it just seems so unfair but sadly it's an all too familiar story for thousands of people just like her....

Please share this link, let's get Marni mobile! 

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