Adults – Stories and Experiences

Anna, Type 2, in her powerchair (website circle)

Anna’s Story

After fleeing the war in Ukraine, Anna, who has SMA Type 2, was in desperate need of a powerchair here in the UK. Read her story and find out how our Support & Outreach Team was able to help.

Image shows an adult man, who has SMA, sitting in his wheelchair holding an ice cream in one hand, and a drink in the other.

Disability Trolling: How To Deal With Negative Comments Online

Ross has written a recent blog about some of the negative comments he’s been receiving online, and gives his top tips for how to deal with this.

Steven – My Experience with SMA

Steven shares his experiences, from growing up and school, to his career and living independently.

Hayleigh’s story

As part of SMA Awareness Month 2022, Hayleigh shared her story about a particularly difficult time she and her family went through, and the importance of the specialist healthcare they experienced, over 20 years ago.

Luis’ Story

Luis shared his thoughts for SMA Awareness Month in 2022.

Image shows an adult man, who has SMA, sitting in his wheelchair with a view behind him of the sea.

Life Updates from Ross

Ross shared some updates on his blog, including how he’s been pushing himself out of his comfort zone.

Image shows a lady who has SMA sitting in her wheelchair wearing a wedding dress and holding a bunch of flowers. She is next to a man who is crouching down, patting a greyhound.

Suzanne: New Beginnings

Receiving treatment, completing a PhD, and getting married – quite a hat trick in one year!

Image shows a young adult who has SMA, standing and holding a drink in one hand. She is wearing a blue dress and white trainers.

Eden – Growing Up and Living With SMA

Eden is 20-years-old and has SMA Type 3 – her experiences, include going to school, learning to drive and going to university.

Image shows an adult man talking to camera, he is wearing a dark blue top and has glasses with round frames.

Steven: The Only Limit Is The One You Set Yourself

In this video, Steven reflects on going to school, learning to drive, university, commuting to work and gives some top tips!

Image shows a young girl with fair hair in a blue school uniform with a white collar.

Mia Looks Back At Her School Days

How school became an essential part of her life, making friends and the role that staff / TAs played.

Image shows an adult man who has SMA, sitting in his wheelchair. He is wearing a grey and white striped top.

Gary Shares His Experiences

In this video, Gary, in his 60s, looks back at living with SMA from his childhood to the present day.

Image shows an adult woman, who has SMA, sitting in her wheelchair and wearing a dark purple top.

Fleur – Everybody: Check Your Sats (Oxygen Saturation)

Fleur shares her story here and explains why she’s asking you to check your sats.

Image shows an adult man wearing a black hoodie that says 'Good Vibes' on it. He is wearing sunglasses and smiling.

Ross – Life’s Too Short…five top tips

Ross, a Cornish Lifestyle & Disability Blogger who has SMA Type 2, gives his five top tips to help improve a low mood.

Image shows an adult man, who has SMA, sitting in his wheelchair. He has grey hair and a grey beard, and is wearing a blue hoodie.

Julian’s Life Experiences

Julian talks in this video about living independently, family life, overcoming challenges, commuting to work, and learning to drive.

Image shows a young adult in a standing wheelchair. She is next to an adult man.

Jasmine Fundraises for a Wheelchair

Some of her experiences and how she went about raising the funds for a new wheelchair.

Image shows an adult lady, who has SMA, sitting in her wheelchair. She is wearing a pink jumper and a black and white skirt.

Suzanne Celebrates her 50th Birthday

Suzanne, who has SMA Type 2, talks about her life and how this year she was celebrating a very special birthday.

Image shows a lady who has blond hair speaking into the camera. She's wearing a blue jumper.

Joan – Living Independently (2010 & 2016)

Joan decided to live independently when she was 42. Read her story from 2010 and see the video of how she’s getting on in 2016.