Today at school it is ‘Jeans for Genes’ Day. when the staff and pupils are encouraged to wear denim to raise money for charity for people with genetic disorders. Joshua’s school does this event every year but it does not have the public profile of Red Nose day, Children in Need or even the Macmillan Coffee Morning that is coming up next Friday. The idea is that the children pay to wear their jeans to school, but while this might be exciting in mainstream schools, for many of the pupils there, deviating from the norm will cause them stress disorientation and anxiety. Joshua is in 6th form now so he is not tied to any uniform, he can wear his jeans any day of the week, so it is nothing special for him either. Nonetheless, I will dress him in jeans and pay his fee to the charity as I am sure there are some children with genetic disorders at his school.
Unless a parent or child confides their diagnosis to you, I do not know what each pupil’s disability is. I know that the majority of pupils at Joshua’s school have autism but this can often not be the sole diagnosis, as it can offer be accompanied by ADHD , epilepsy or other conditions, so no two pupils are the same, Once we got baby Joshua came home from school, the hospital called us back for blood tests, to investigate the possibility that the combination of our two blood types might have been the cause of Joshua’s stroke and subsequent brain damage. They got very excited over the first blood test results as it seemed to show some critical combination of our two bloods that could have created the problem, but on re-testing, they admitted that the theory had been made in error. At that time, 18 years ago, we were keen to understand why it had happened and if we were to have another child in the future, might the same thing happen again. In the end the medical profession could not give us any reassurances or explanations.
I do not know much about genetic disorders, but presumably children may inherit them due to hereditary conditions which may or may not be predictable before birth, or they could be a new condition that develops due to a fateful combination of the parents’ genes. The only genetic disorder that I know is routinely tested for during pregnancy is Downs Syndrome. The issue for me is how much reliable information you could be given about your baby for the parents to be able to make an informed decision about its future? Even with the risky amniocentesis test, no promises can be made about whether or not the child will definitively have the condition as only odds are given and even then, no estimate of the degree of disability can be given. Even when Joshua had arrived and was scanned, although the doctors told us about his ‘devastating brain damage’ they could not reliably transform that into guarantees about his ultimate abilities and quality of life. So I believe that the prediction of Downs Syndrome, for instance, can only be a judgement for the parents to make as to whether they could cope with a disabled child, whatever the degree of that disability, The parents who have the test are then given an unenviable choice to make about their willingness to continue with the pregnancy and presumably, other parents with known inherited conditions also face that same choice. But in our experience, and for the majority of parents that I know, the disability of their child was a shock delivered as early as 4 days old in our case, or perhaps much later, as a toddler did not thrive as expected or even later, as a child did not develop like his or her peers at school. By that time, the child is a loved member of the family and a child that needs extra care and support, and there is no decision to make, it is simply a matter of doing the best possible to encourage that child to meet its potential, whatever that might be.
So for now, Joshua will be proudly wearing his jeans today and he will donate to the charity , Genetic Disorders UK, and hope that our donation will help some struggling families or to fund some vital genetic research.