** 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, some on a very large scale. We were therefore surprised and disappointed somewhat to learn when we met a Haemophilia Society representative that this charity did not attract such numbers of volunteer runners, in fact, there was only one other set of participants on the day. Therefore, your contributions matter even more and are so very very much appreciated.
Thank you all so very much, we always thought we set ourselves a 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 Haemophilia Society
www.haemophilia.org.uk
The Haemophilia Society is the only national and independent organisation for all people affected by bleeding disorders. The Society is led by affected people and works in close partnership with the NHS. They provide information and support for all people affected by bleeding disorder and represent their interests.
The Society was established in 1950 and has over 7,000 members and supporters with a network of 16 local groups across the UK.
Coming to terms with the diagnosis was difficult for us and we had questions and searched for as much information as possible. The Haemophilia Society helped us by providing booklets, DVD and information on all aspects of living with a bleeding disorder. They were also available to speak to us about anything even something as simple as travel insurance for Rohan.
The Society also offers small grants (typically £5-£10k pa for one to three years, part or whole funding) for medical and psycho-social research studies in the UK which provide insights into improving treatment and care of people with a bleeding disorder of all ages and their families. Certain research projects are also directly commissioned.
We are also running for The Great Ormond Street Hospital - Haemophilia Centre
(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.
