My son Roman, aged three, lives with the very rare muscle-wasting condition LMNA-CMD.
He was diagnosed at the age of one, and getting the news was really hard to take for myself and his dad as we didn’t know anything about muscle-wasting conditions before this.
Shortly after Roman was diagnosed we went into lockdown and we found it difficult to get the right clinical support and speak with the relevant departments who could help us.
Despite all the challenges he faces, Roman is a boy who is so full of life. He doesn’t let anything hold him back and amazes everyone who meets him.
He loves jungle animals and going to nursery. His friends are brilliant with him and seem to understand his additional needs at such a young age.
We now have a lot more knowledge and are finding our feet with Roman. But it can be a very lonely world, and none of our friends and family have been through an experience like ours.
This inspired me to write a children’s book to help people learn more about the support Roman needs with his condition, in a way that is easy to understand.
It’s also really important to have more storybooks with Black representation.
I hope this book will help Roman not have to keep explaining his condition, and that this will allow him to enjoy life and be the child that he is.
I am also really conscious that I don’t want Roman to feel like he is the only Black child living with a muscle-wasting condition.
Given that muscle-wasting conditions are so rare, we want Roman to know there are other children, adults and families in the Black community who understand what he is going through.
That is why it is so important for us to raise our voice to ensure that Roman feels more part of a muscle-wasting community that better represents Black people and their families.
I’ve just been appointed as an ambassador for MDUK, and I’m excited to say I’ll be specifically focused on connecting, representing and expanding the Black muscle-wasting community.
I’m also really pleased that the charity has recently created an EDI working group and is working to improve its diversity.
I hope that in my role I can use my voice to make a difference, making life more inclusive for Roman and other Black families affected by neuromuscular conditions.
To get involved or to learn more then please contact EDI@musculardystrophyuk.org