Emma-Jayne is a dedicated caregiver to her son, Dregan, aged 23, who lives with congenital myotonic dystrophy. She provides his immediate care at home (as his personal care assistant and team manager for his continuing healthcare personal budget) and ensures his complex needs are understood and met by healthcare teams. She also works as a consultant patient representative, supporting families and helping improve the quality of life for people with muscle-wasting conditions.
Emma-Jayne explains that she has gained lots of expertise over time, saying “To begin with it was really difficult to ask questions of experts, but then as we learnt more, especially from working with Muscular Dystrophy UK (MDUK), we found we often knew things that those we were seeing didn’t. Then we had to start advocating more strongly to make sure the right things were happening for Dregan.”
In 2015, Emma-Jayne was part of a group of families who set up the Congenital Myotonic Dystrophy Fight Fund, a family fund which raised over £130,000 for MDUK. She is a Founding Trustee of Cure Myotonic Dystrophy UK Charity, supporting other families living with muscle-wasting conditions, organising peer support events and helping to raise awareness.
Alongside her husband, Peter, she represents the myotonic dystrophy community in various European research and care organisations, as well as within MDUK’s Content Advisory Group.
Sharing knowledge to help others
Emma-Jayne says “the more we learn, the better Dregan’s quality of life is. Then we can share our experiences so other people don’t have to go through the bad things.
“If it wasn’t for the support from MDUK at the start of our journey, I am sure we would be in a different position now with Dregan, and I am not even sure he would still be with us. I am proud to work with MDUK in any way I can to make a difference where I can, while I am able.
“I am also proud that in 2021 we began the first ever International Myotonic Dystrophy Awareness Day, which sees worldwide support groups, charities and organisations coming together on September 15, every year, to raise awareness. This is Dregan’s birthday and will always be a legacy to him. Dregan is why we do this. He’s a dude, and he inspires me every day. That’s where I get my energy.”
A very humble winner
“It’s really nice to be recognised – I don’t think I deserve to be carer of the year at all, there are so many carers out there that probably deserve it much more than me – but it’s so nice that somebody thought that I do, so thank you.”
“We do what we can, and we learn about what we can do with Dregan, so hopefully other people will benefit from that. It’s such a rare and complex condition, it’s important to share that knowledge. If other people don’t have to go through what we’ve been through, then that’s a good thing.”
Gabby Logan said “You are quite simply a remarkable human being”
The judges said that Emma-Jayne “moves the boundaries for what being a carer means in the big picture of improving the lives of people with muscle-wasting conditions, but also for community members and other people who are helping to care.”
They said that Emma-Jayne goes “above and beyond” in the support she provides for her son and other people with muscle-wasting conditions. “I’m not sure where she gets her energy, but she uses all this experience in caring for her son, Dregan, to change the future for others with the condition and their carers.
“I admire her dedication to giving Dregan the very best quality of life that she can. She has embraced the caring role that life has brought her, educated herself, and used advocacy to improve the lives of people with neuromuscular conditions."
The Alexander and Valerie Patrick Award was established in memory of their lifelong commitment to and generous support of the charity. Valerie and Alexander were passionate about supporting the provision of accessible equipment for those living with muscular dystrophy via the Joseph Patrick Fund, which continues to provide thousands of individuals and families with grants needed for wheelchairs and vital equipment.
Our annual President’s Awards celebrate the fantastic contributions of our community members. Find out more about the awards and the winners here.