In May 2010 parents Clare and Craig received the devastating news that their 4 year old daughter, Ella, had been diagnosed as a Manifesting Carrier of Duchenne Muscular Dystrophy.
Since diagnosis, the family have been resolute in their fundraising efforts to help advance research into finding a cure for the condition, with some funds going towards helping them prepare for an uncertain future. Having already raised over £45,000, they have now decided to set up #TeamElla, a Family Fund with Muscular Dystrophy UK.
Clare and Craig, had raised concerns prior to Ella’s diagnosis as her mobility seemed delayed compared to her peers. They became increasingly worried as they hadn’t seen Ella walk, even though she was nearly 18 months old.
Despite their concerns, Ella’s symptoms baffled doctors and after numerous assessments the family turned to the advice of their paediatrician Dr Patrick Ward.
Clare, Ella’s mum, said:
Dr Ward was a massive help to us and agreed Ella’s condition needed further investigations. After a long-awaited blood test it was confirmed that Ella was a Manifesting Carrier of Duchenne Muscular Dystrophy.
Ella’s dad, Craig, added:
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.
Clare and Craig are completely devastated that their little girl has been affected by this condition. After years of hospital tests and watching Ella struggle to do things other girls her age do, they are determined, along with the support of family and friends to help make a difference for their daughter and others with Duchenne muscular dystrophy.
Family Fund #TeamElla has been set up by Clare and Craig to help raise awareness and vital funds to support the work of Muscular Dystrophy UK with the Duchenne Research Breakthrough Fund.
In 2018 #TeamElla are asking people to join their brave Make Today Count Sky Dive team to fly in the fight against Duchenne muscular dystrophy and help them raise funds for research. Could you take on this epic challenge and join #TeamElla in March 2018? If you would like to register for Make Today Count click here!
How you can help