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.

So now to begin...

My daughter, Sophie, was born with a very rare condition, ulrich muscular dystrophy. There are less than 300 children in the world like Sophie who have been diagnosed with this condition. Many children with this condition never walk. It is a progressive condition.

There is currently no cure but there is hope. There are plans for a clinical trial of a new drug and lots of efforts to understand more about the type of MD that Sophie has. 

Sophie has undergone a number of operations as she was also born with DDH (Developmental Dysplasia of the Hip). She currently has a metal plate in her right hip. To date Sophie has undergone 7 different operations with more in the future.

Sophie now has contractures of the elbows, knees and hips, causing her pain and these contractures will worsen with time. Sophie is gastrostomy tube fed due to poor weight gain and lack of strength when eating as she tires easily. She will also need ventilation as her chest muscles will weaken too meaning her lungs will be unable to function. Sophie has started to show respiratory difficulties. She also has curvature of the spine and spinal surgery will be required within a few years

The lifespan of children with this condition is anything between 10 yrs old and 18 yrs old depending on the severity they are born with and the rate of progression. 

Sophie is unable to push up when laying on her front, crawl, stand, walk, she can sit unaided but has to be supervised due to falling over and not being able to stop herself/weight bear to control the fall. 

Sophie is known as a 'Severe' Type

Again there is no cure for this condition, but there is hope. I will be running the longest 26.2miles of my life to raise money to help with research into finding a cure for my little girl. So i ask you all to please help me with this and donate :-) 

A big thank you to you all xxxxx