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“I want to make the space my son will be entering for his additional needs a more diverse one”

8 February 2023

A year into her role as Muscular Dystrophy UK’s Equality, Diversity and Inclusion Ambassador, we catch up with Tiffany Hesson about her personal commitment to championing diversity within the muscle-wasting community.

How did you become interested in issues around equality, diversity and inclusion?

When I found out that my son, Roman, has LMNA-related congenital muscular dystrophy (LMNA-CMD), I started the mission to make the space that he will be entering for his additional needs a more diverse one. He’s a very positive, happy, determined child. He doesn’t let his condition kind of stop him. He really does have a positive outlook – and it rubs off on everyone around.

I love making change and making people feel included. I think that’s just always been embedded in me – to not let people feel left out. When it comes to Roman, I’m doubly wanting to make him, and others who come after him, feel included and ensure this system works for them as well.

Why did you want to become an EDI ambassador at Muscular Dystrophy UK (MDUK)?  

Following Roman’s diagnosis, the doctor signposted us to charities like MDUK. But at the time, there were no in-person meetings happening because of lockdown. It felt like all of the coping mechanisms that other people have probably had, like support groups, were all shut down for me. 

I read up on information, but I quickly realised when I went on the website and social media, I didn’t see people who looked like me and Roman. I worried that I might feel like the odd one out when I went to meetings.

So, I contacted the charity to see how we could make it more diverse. I’m very much in touch with my community so I said, “I’m here to help”. MDUK listened and welcomed the help I was offering. They weren’t defensive at all, which was so encouraging.

What does EDI mean to you? 

My number one priority is including people.  

Number two, I want to make a change ahead of time. I want to begin the work for Roman so he’s not starting from scratch. 

I want it to be that when he looks at the charity, he’s like, ‘oh, there’s another little boy that looks like me, or there’s a little girl’, or not just see one type of person, because we live in such a diverse world, and I want that to be represented.

I can only imagine on his behalf, but I can imagine it could be quite a lonely journey.  

What does your role as an EDI Ambassador involve? 

My role involves attending meetings, championing diversity, and encouraging learning and development of the EDI strategy. For example, last year, I met with Sajid Javid, the former Secretary of State for Health and Social Care, to give my perspective as a parent of a child with a rare disease from an ethnic background.  

I’ve also been involved with attending events, like BGC Partners’ annual Charity Day as a representative, to help raise awareness about key issues. I’m learning as I go too – I’m going on this journey with MDUK.  

What changes would you like to see at MDUK and within society?

I want to help people build connections and develop support networks. I’ve met people with a similar diagnosis to Roman and that’s been brilliant – the reassurance that we’re not the only ones going through it has been invaluable. So, I’d like to be able to do that for someone else as well. It’s a great way to share information and talk about our feelings. 

And finally, I want to continue helping the charity to become more educated and reflect the diversity of its community. I’m helping to raise awareness – we need to keep speaking about these things so we can make positive changes.   

With Tiffany’s support, we’ve just launched our first equality, diversity and inclusion document at Muscular Dystrophy UK. Read the document here or get in touch with us at  

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