My son Duncan is diagnosed with Severe Haemophilia A. He is missing the clotting factor (Factor VIII) that causes blood to clot.
Haemophilia causes dangerous haemorrhages internally and into the joints and muscles, resulting in severe pain and eventually causing crippled limbs. It leads to interrupted education and eventual difficulties in obtaining and keeping employment. Frustration and depression so engendered can be the cause of social difficulties.
The condition demands medical and social attention out of all proportion to its frequency, placing considerable financial demands on both affected families and Provincial health services. Haemophilia is not curable. Effective treatment has become available only in the last two decades, mainly due to the improvement of technology to extract the relevant protein from donated blood and administering it to the affected individuals.
Currently our treatment cost us approximately R 23 200.00 per month (1210.98 Pound / 1607.23 USD). That is only for his normal treatment and not when he has a severe bleed and needs extra treatment or his hospital costs.
We are lucky to have a good medical aid that cover most of the cost but there is still families who does not have a medical aid and cannot afford treatment.
We would like to raise funds to donate to South Africa Haemophilia Foundation. (http://www.haemophilia.org.za/donate/ ) so enable them to help those families in need. And to create World Haemophilia Awareness #WHD on world haemophilia day 17 April 2019
Gene therapy provides a potential phenotypic cure for hemophilia, yet the cost of this novel treatment is high and will cost us Millions when it comes to South Africa. If we see this site can raise enough funds we also would like to consider making use of this platform for our son in the future.