.Thanks for all the support to everyone, the hard work paid off and the Grand total now comes to £7,000.00, including all sponsors and donations so far.

 

Beaulieu Motor Museum 27th November 2010 7pm-12.30am Fairy Masked Ball. 

Email me for details nikkiytene@hotmail.com

 

Thanks for taking the time to visit my JustGiving page.

So please dig deep and donate now"

In July 2008, our daughter, Katherine was diagnosed as suffering from Juvenile Dermatomyositus -this was picked up shortly after she was diagnosed with diabetes (Type1) in April.  By this time Katherine had become very weak and was suffering from extreme fatigue -unable walk to school, climb stairs, get in the bath, or join in any activities of a normal 5 year old girl. Our world was turned upside down!  Initially we didn't appreciate the implications, fortunately we got in contact with the Myositis support group and were able to attend their annual conference which by luck, was taking place the following weekend. At the conference we were introduced to Dr Lucy Wedderburn from Great Ormond Street Hospital, and were informed of a research programme they are running and asked to become part of it (GOSH has a large number of the estimated 250 children with JDM in the UK on their books).

Juvenile Dermatomyositis is an auto-immune disease which affects the skin (derma-) and muscles (-myo) of the body. If not managed properly, the skin rash can become ulcerated (in some cases requiring surgery); and the muscles in the body are attacked which can include the internal muscles, affecting both heart and lung function  rarely this can be fatal. Joints become inflamed and calcium deposits can form under the skin. Exposure to sun light can cause the condition to flare.

Until we visited GOSH 3 months later Katherine was only being treated with steroids and we could see she was not improving. Under the guidance of GOSH, Katherine's went onto chemotherapy drugs including methotrexate and eventually cyclophosphamide.

Visiting GOSH turned out to be the best thing we could have done, things fell into place and her battle against JDM began (see photos). A link has now formed between Southampton General Hospital and Great Ormond Street. Katherine now has a fantastic consultant at Southampton and her care is better than we could of ever imagined, We can't thank Dr Alice Leahy (Southampton) and Dr Pilkington (GOSH) enough for all their help. Although the JDM is not under control, we know that Katherine is receiving the best care that we as parents could hope for. Katherine has good days and bad, and their are harsh side-effects from the drugs including: sickness, tummy pain and headaches as well as the long term implications from the condition and medication. We hope she will go into remission one day soon!

I would like to thank everyone for your support and hope this page is able to help other children like Katherine.      Funds raised on this page will go to the children's Rheumatology unit at Southampton General Hospital and to help children with JDM, LUPUS and ARTHRITIS (linked conditions).

To give you some idea about why we are raising money you may wish to go to:

http://www.youtube.com/watch?v=rc5GqyoPGGk&feature=related

or http://www.youtube.com/watch?v=zp-rT8TAJvM

Dr Leahy is working on improving the link between Southampton General Hospital and Great Ormond Street Hospital, funds raised will improve training  and management of the condition. Please donate what you can, Dr Leahy needs our help and she truly deserves our support. All this money raised will help many children with JDM, LUPUS and ARTHRITIS AT Southampton General Hospital.

 

email me on nikkiytene@hotmail.com 

Thank you  again.  Nikki