SMA Type 3 has changed how I live my life, but treatment, community, and sharing my story have given me hope.

Eden was a typical baby, but when she was two years old her parents noticed that she kept falling over and wasn’t able to keep up with the other children.

They took her to the paediatrician who diagnosed her with ‘clicky hips’.

Her parents however weren’t convinced and when the health visitor also mentioned concerns, they got referred for genetic testing. The test confirmed their suspicions and she was diagnosed with spinal muscular atrophy (SMA), a rare genetic condition that causes muscle weakness and gets worse over time.

“As a toddler, I had lots of tantrums. With hindsight it makes sense as I was having difficulties with my movement and my muscle strength. I was frustrated that I couldn’t keep up with the other children.”

There are many different types of SMA and Eden was diagnosed with Type 3. People with Type 3 SMA have varying degrees of muscle weakness and restrictions to their movement, compared to people with Type 1 who typically can’t sit or walk and have difficulties breathing due to the weakness in their respiratory muscles.

Treatment for SMA has changed dramatically in recent years, but when she was diagnosed aged two and a half there was no treatment.

“Back when I was first diagnosed, my Mum and I were sent home with a piece of paper and an offer of an annual check up. There was no support and little information. That’s changed dramatically in recent years and I started treatment when I turned 21.”

Eden’s Mum was a fitness instructor so she knew the importance of movement and helped keep Eden as mobile as possible. Now aged 25, Eden can walk short distances but often relies on a mobility scooter.

“I first got a wheelchair when I started secondary school but I hated it. I could still walk a bit which meant I wasn’t really part of the disability community, so it was a very lonely time. I didn’t know anyone else who had SMA and the future seemed very uncertain.”

After school, Eden wanted to go to University but it wasn’t a straightforward decision. She opted for a course that was based in the same town as her Nan and within two hours of her Mum so they could both help her.

“I couldn’t have gone to University without their help. Simple tasks like taking wet washing out of the launderette were impossible for me so I needed their help and support to make it happen.”

University marked a big change for Eden. She decided to stop hiding her condition and started an Instagram page to chronicle her experiences and the realities of living with SMA.

“This was a huge turning point for me. By sharing my experiences and talking to people I feel less alone, but I’ve also helped other people too.”

In her second year of Uni, Eden was offered treatment for the very first time.

“I had seen online that treatments were being developed but I tried not to get my hopes up. I’ve been taking risdiplam for 3 years now and I can really feel the difference. I used to fall over regularly, but I’m stronger and haven’t fallen for over a year now. I still use a scooter, but I can do more and I can push myself further than ever before.”

Eden now has two degrees and works as an Educational Mental Health Practitioner in schools. She lives with her boyfriend, who she met at University and the future is looking very bright. Now aged 25, she’s having to face questions that her friends don’t yet have to think about.

“I’ve always wanted children, but I don’t know if my body is strong enough to carry my own pregnancy. I do know that I wouldn’t be able to pick up a baby or run around after a toddler. I can’t ignore these big questions in my future.”

Eden is passionate about raising awareness and understanding about SMA Type 3 and has recently contributed to a book called ‘Our SMArt world’ which is a collection of stories and poems about people’s experiences of living with SMA in conjunction with the charity SMA UK.