Sixteen years ago Gunel was born with the disease thalassemia major. Children born with the disease are normal at birth, but develop severe anemia during the first year of life, and have a life expectancy of 20-30 years. That is if they can get regular blood transfusions, and treatment.
When Gunel comes into the room, I know she's not well, but I didn't know any of this. She looks maybe 12, and is not much bigger than her 6 year old brother, Samir. It is obvious that she has not grown as normal, that she is jaundiced and has some facial deformities, but her mum tells me that she is also constantly fatigued - pretty much all the symptoms of thalassemia major.
For a child to be born with the 'major' form of the disease, both parents must be carriers of the defective gene. This knowledge, which came in hindsight, has resulted in the divorce of Gunel's parents; and mum blaming herself.
Because she's sick no school will accept her, and when she was referred to our team of Community Workers by a neighbour, her mum was having trouble accessing blood transfusions and treatment. There are no health benefits here; there is a public hospital system, but that doesn't mean it is free or affordable and as for blood - well, get in line and be prepared to pay.
Not to be beaten, the case worker turned to social media; she put Gunel's story on Facebook and asked her 'friends' to volunteer to give blood. So far, it has worked, each time Gunel needs a transfusion they are able to find a volunteer. But despite the treatment school is still out of the question, so Gunel attends the day centre managed by our partners (UAFA) and she loves it. She has attended dance and drama classes and recently participated in her first stage production. But most of all she loves art, and in particular bead work.
As we leave the neat, clean 2 room (50m2) house with no bathroom, Mum comes with us to talk in private with the case worker. Making sure Gunel and Samir are still inside, she tears up; she has recently discovered that thalassemia major children in this country do not usually live until they are 16.
When Gunel comes into the room, I know she's not well, but I didn't know any of this. She looks maybe 12, and is not much bigger than her 6 year old brother, Samir. It is obvious that she has not grown as normal, that she is jaundiced and has some facial deformities, but her mum tells me that she is also constantly fatigued - pretty much all the symptoms of thalassemia major.
For a child to be born with the 'major' form of the disease, both parents must be carriers of the defective gene. This knowledge, which came in hindsight, has resulted in the divorce of Gunel's parents; and mum blaming herself.
Because she's sick no school will accept her, and when she was referred to our team of Community Workers by a neighbour, her mum was having trouble accessing blood transfusions and treatment. There are no health benefits here; there is a public hospital system, but that doesn't mean it is free or affordable and as for blood - well, get in line and be prepared to pay.
Not to be beaten, the case worker turned to social media; she put Gunel's story on Facebook and asked her 'friends' to volunteer to give blood. So far, it has worked, each time Gunel needs a transfusion they are able to find a volunteer. But despite the treatment school is still out of the question, so Gunel attends the day centre managed by our partners (UAFA) and she loves it. She has attended dance and drama classes and recently participated in her first stage production. But most of all she loves art, and in particular bead work.