Our CHD2 son is now aged 21 and has for the last year has been bossing us around in our own home: making decisions about who should be in what room…
Moving towards independence
CHD2 Prognosis in the UK – do we have the whole picture?
As a co-founder of the CHD2 UK support group, I was becoming increasingly aware that many of our new families with recently diagnosed CHD2 children were having difficulty coming to…
Children’s social care: a parent’s perspective
According to advice on the Contact For Families With Disabled Children website, "the law says that councils must assess every child who is or may be a child ‘in need’.…
So you have been diagnosed with a rare genetic condition – what next?
It has taken 13 years for my son’s ultra rare genetic medical condition to be diagnosed. Unfortunately for many parents and carers, they’ll never receive a diagnosis and that must…