Skip to content

Ella who is 17 was diagnosed aged 4 as a Manifesting Carrier of Duchenne muscular dystrophy, a progressive muscle-wasting condition which currently has no cure

The whole family have been resolute in their fundraising efforts to help advance research into finding a cure for the condition through their family fund #TeamElla.

Duchenne muscular dystrophy is often only associated with people assigned male at birth, as it is caused by a mutation on a gene located on X chromosomes and so in people with XY chromosomes there is no other functioning gene to compensate. Though it affects the lives of many more people who live with the condition.

People assigned female at birth are often only considered carriers of Duchenne muscular dystrophy, even though (while rare) they can also have Duchenne when the mutation is present on both their X chromosomes. In these cases, they are commonly identified as a ‘manifesting carrier’.

Following Ella’s diagnosis, Dad, Craig, said:

It was difficult for us to come to terms with Ella’s condition, but at least we knew what we were dealing with. It gave us an opportunity to focus on finding a cure for our special girl

Whilst Ella’s condition causes her pain and severe fatigue, she doesn’t let it stop her from living her life. Ella is currently studying at Beauty College, something she really enjoys. In her spare time, she loves to relax with her beloved dog Cooper whilst watching her favourite football team Manchester United. When her condition allows, Ella enjoys going to gigs (she loves Oasis!) with Craig and Clare and has a huge love of all things Disney!

Net proceeds from #Team Ella will be split 80% for research into Duchenne muscular dystrophy and 20% for the Ella’s future welfare.

Join the Muscular Dystrophy UK community

Share your experience and find advice from others with similar conditions.