In November 2018 our daughter Nora became suddenly and life-threateningly ill with a rare autoimmune condition called Juvenile Dermatomyositis which left her unable to walk, stand or sit, and began to affect her speech, swallowing and breathing. We were days away from losing her, and without the correct diagnosis, or response to her ongoing treatment, we undoubtedly would have done. 

We have come a very long way since then and are grateful in so many ways. However, even with the right diagnosis and treatment, Nora still faces a lifetime of uncertainty, medication, side effects and potential disability.  

There are few lonelier or more difficult paths as a child, parent or as a family. Yet as is so often the case, where there is despair there is also hope - you just have to look for the helpers...

Nora’s condition is one of many that falls under the umbrella of Muscular Dystrophy UK which is  the charity for the 70,000 children and adults living with muscle-wasting conditions in the UK. MDUK do vital work in funding pioneering research into treatments and cures as well as providing vital information, advice, resources and support for individuals and families living with these conditions.All donations, big or small, are greatly appreciated. 

Every single penny helps a family like ours know they are not alone, and provides access to advice or support. Your donation might even be the one that funds the medical research that finds the next piece of the jigsaw towards a cure.

We can’t thank you enough for your support, 

Ems, Will, Harry and Nora xx