On Sunday 7th May my lovely brother James, my fab friend Bec and I will be abseiling down the 560 foot tall Spinnaker Tower in Portsmouth, in aid of ReMission UK. 

We will be doing this for my beautiful, amazingly brave daughter Charlotte who suffers from a very rare childhood autoimmune disease called Juvenile Dermatomyositis (JDM).

JDM affects only 3 in a million children in the UK and currently there is no cure. 

It is an autoimmune condition, which means that the immune system which normally protects the body reacts abnormally and becomes overactive.  JDM primarily affects the skin and muscles, but can also affect other parts of the body, such as joints, lungs, heart and blood vessels. 

Charlotte was diagnosed with JDM at Great Ormond Street Hospital in June last year, but was suffering with symptoms months before this. We watched Charlie rapidly change from a very healthy, active girl into one that struggled to walk and even hold a knife and fork.

Luckily Charlotte was diagnosed very quickly.  She underwent many diagnostic tests including an MRI, ultrasounds and a muscle biopsy operation and was immediately put onto a treatment programme including steroids and weekly methotrexate injections. Thankfully many of Charlie's muscle symptoms were swiftly brought under control by medication.  However Charlotte still battles with the skin aspect of the disease and to control this she started a cycle of chemotherapy at the end of last year, which is due to finish in March this year.

Charlotte is doing well under the care of Great Ormond Street Hospital and Colchester General Hospital and the specialists there are currently trying to find the right combination of drugs for Charlotte, so she can live a life without pain and rashes and hopefully, in time, the disease will go into remission. 

ReMission UK supports research into JDM.   As the disease is so rare, research is invaluable in order to find new treatments and drugs to help obtain remission for all children struggling with this condition and to one day, eventually find a cure.

We have organised our Spinnaker Tower abseil to help raise funds for vital research and at the same time increase awareness into this very rare disease.  

Thank you so much for taking the time to visit this page and if anyone would like to come and support us on the day, you'd be very welcome!!!

Team: Rebecca Golbourn, James Caplin & Emma Russell 

ReMission website: http://remission-charity.co.uk/services.html

Juvenile Dermatomyositis Research Group website: https://www.juveniledermatomyositis.org.uk/

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.