In 2021 my cousin Rebecca gave birth to a beautiful baby girl Ellie. Rebecca being a midwife felt something wasn't quite right and after tests Ellie was diagnosed with Prader-Willi Syndrome. 

PWS is a complex genetic disorder that occurs in 1 in 22000 pregnancies. 

Basically, a little bit of one of Ellies genes is missing, that bit unluckily happens to be a very complex part of DNA which isn't well understood and affects part of the brain. 

It's an ironic condition in that in the early days they struggle to feed and gain weight and then as they become older require fewer calories and gain weight easily, made worse by feeling constantly like they are starving no matter how much they eat.

People with PWS have lower tone than normal and their muscles are not as strong making exercise more difficult.

Babies can take longer to meet their milestones. People with PWS can have issues with learning and behaviour (stands to reason if you feel constantly starving).

Ellie was diagnosed early and started daily injections of Growth Hormone, which is proving beneficial but it’s a lifelong condition.

I was born and bought up in Norfolk, my late Dad (Rebecca's uncle) and Mum are fully fledged Geordies. So, when I saw the chance of running the Great North Run for PWSA I got excited!! 

A great opportunity to raise money for an amazing charity and support my beautiful little second cousin ❤️, a challenge for me and a time where I can be in a city where my family come from which is so close to my heart.

Please donate, even if it’s only £1 it's going to an amazing cause to help many families 

Thanks for taking the time to visit my JustGiving page.

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.