** UPDATE **
“Nina, Kate and the girls Maya and Holly all completed the Addidas 5K challenge successfully and with times of 45min and just under the hour mark…not bad for a first attempt!!
It was quite a hot day but everyone thoroughly enjoyed the event – please see all the photo’s for the day.
Numerous charities were funded on the day but none more it seemed than Great Ormond Street, which is such a superb organisation supporting so many areas.
Thank you all so very much, we always thought we set ourselves very ambitious target of collecting £1500 for this charity and feel very humbled with all your generosity – THANK YOU!”
Love Nina, Kate, Maya and Holly
Who are we running for?
The Great Ormond Street Hospital - Haemophilia Centre
www.ich.ucl.ac.uk/gosh/clinicalservices/haemophilia
The Haemophilia Centre at The Great Ormond Street Hospital provides all of Rohan's medical needs, including his dental care. When we found out about Rohan's condition last August 2008, they gave us incredible support in both practical and emotional terms. It was a real shock to discover our son, Rohan had severe Haemophilia A. In fact it has been one the most difficult things as parents we have had to deal with to-date.
In the photos you will see Rohan's bruising pre-August 2008. We visited the GP and health visitors several times as we were concerned with Rohan’s bruising. We were always told it was simply knocks a young child picks up and not to worry. Luckily his condition was identified by chance by our new family doctor last summer. Great Ormond Street Hospital have literally been a lifesaver for all of us. Rohan even looks forward to going to hospital, as they have created such an excellent environment. The team have also visited Rohan's school to educate them on his condition ensuring an emphasis on not making him feel different. They are always available 24 hours a day 7 days a week for us.
Great Ormond Street Hospital will one day be part of the reason Rohan's life is made easier. We have to administer 3 injections into Rohan's vein every week, although he will do this himself in time. Great Ormond Street Hospital have patiently trained us to do this. We hope in the future through gene therapy and research into having one injection instead of three injections a week, this will be an achievable dream in Rohan’s lifetime.
We are also running for The Haemophilia Society
(Please sponsor us for this cause on our other page...)
What is it?
Hemophilia is a disorder of the blood-clotting system. Normally when you cut yourself your blood plugs the wound by changing from a liquid to a solid and forming a blood clot. If you have hemophilia your blood will not clot normally and you may bleed for longer than normal. However, the real risk I is because your blood is so thin, it can literally bleed through the veins causing you to bleed internally, particularly into joints such as your knees, elbows, ankles and even the brain causing irrevocable damage.
Blood contains special proteins, called clotting factors, which are involved in the clotting process. There are 20 different clotting factors. If you have hemophilia, your body does not produce enough, or produces none of these clotting factors.
There are different types of hemophilia. If you have hemophilia A, you have a deficiency of clotting factor VIII (known as factor VIII). Hemophilia A is also known as classical hemophilia and is the cause of about 80% of cases.
Hemophilia can be mild, moderate or severe, depending on how much factor VIII is missing from your blood:
Mild hemophilia
Your blood contains 5-25% per cent of the normal amount of factor VIII.
Moderate hemophilia:
Your blood contains 1-5% of the normal amount of factor VIII.
Severe hemophilia
Your blood contains less than 1% of the normal amount of factor VIII.
Hemophilia is rare and almost always affects men. Hemophilia A occurs in about one in 10,000. Hemophilia B occurs in about one in 40,000. About 6,000 people have hemophilia in the UK.
Rohan our wonderful 5 year old boy is the reason for our efforts. We always say "he is the bravest person we know" because of his strength and courage to manage without fuss three injections each week into his vein. Daddy and mummy aren't always fully proficient in finding a vein every time. He is always patient and accepting, with a few tears sometimes! He is our real superhero who has made this terrible disorder bearable.
We also cannot forget, Rohan's wonderful 8 year old sister, Maya, who has supported Rohan and us all the way. Every time we have to do an injection, Maya is part of the routine, playing her Piano or Cello to distract all of us and contribute to the positive environment we attempt to create. We are so grateful for having such a wonderful daughter and Rohan loves her dearly. In fact, Maya is also attempting to complete the challenge with her best friend, Holly Bick and her mummy, Kate.
