Haemophilia is a treatable though presently incurable bleeding disorder affecting approximately 1 in 10000 people globally, mostly males and across all racial and ethnic groups. There are 2 types of haemophilia, viz. haemophilia A and the less common haemophilia B. People living with haemophilia A have a deficiency of the clotting protein Factor Vlll and haemophilia B a deficiency of Factor lX. Both A and B have degrees of severity which are mild, moderate or severe. Whereas Factor levels of people without haemophilia range between 60% and 100%, the levels of people with mild haemophilia range from 5%-25%, moderate from 1% – 5% and severe less than 1%. Our grandson Cadan, now aged 3, was diagnosed at 5 months old with severe haemophilia A.
In people living with mild haemophilia, bleeding issues are relatively few, whereas moderate haemophilia can result in minor bleeding after trauma. In the case of severe haemophilia A, there can be frequent bleeds and spontaneous bleeds, especially into joints, which can cause long-term damage if not treated timeously.
Tremendous medical advances have been achieved over the past 2 decades and Cadan is fortunate to have access to the facility, expertise and treatment offered by the Red Cross Children’s Hospital, about a 15 minute drive from his home. Since his first bleed in late 2012 Cadan has received the most wonderful treatment and support from the doctors, nurses and staff at Red Cross. He now receives prophylactic treatment twice a week at home but still needs to be treated at Red Cross for bleeding episodes. Cadan is one immensely determined, brave, inspiring and capable little boy and shows tremendous fortitude during his intravenous infusions, this largely due to sensitive caring and understanding from Red Cross staff. Of course the love, encouragement and comfort from his Mom and Dad, Dave and Hannah, underpin everything in a situation which affects every facet of their lives. Fortunately Cadan’s parents’ medical aid scheme covers much of his treatment but this is something which is not available to all PWBD (people with bleeding disorders.) There is very little awareness of haemophilia or funding for those living with the disorder and it is for this reason that I’m walking 8km (Factor Vlll was a common denominator) at this year’s annual la Capra Goat Run at Fairview Wine Estate in Paarl on 11 October. Many PWBD do not have access to either treatment centres or Factor and I’m hoping that funds that I raise for the S A Haemophilia Foundation will go towards enabling more people to receive treatment and also raise awareness about the disorder. I know that the main beneficiary of this year’s event is the Sunflower Fund but I’m asking for sponsors in my personal capacity to offer whatever they are able to bring light and hope into even one person’s life.
Our daughter Gill and son-in-law Russell have also entered the event (Russell far fitter and more ambitious, doing the 15km run) so I’ll at least know someone as I trudge up the slopes of the Paarl Mountain! It promises to be a fantastic day out, with a festive atmosphere at Fairview. Once I’ve recovered and caught my breath, I’ll be penning another post with the banking details of the S A H F so that you can donate, wherever you are. I look forward to your support in making a difference.
For anyone willing to make a straight donation, the banking details are as follows:
S A Haemophilia Foundation.
Standard Bank Constantia
Branch code 025309
Account number 076240789
Reference: Your surname followed by “Goat Walk”
Time to put tackie to tar, so till next time – ciao!
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Nice to see your blog going again. Good luck with your goat walk! We will look out for the banking details in your next post so that we can add something to your good cause – but you better finish the race first!!
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I’ll do my best!
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