One of my friends is the proud mum of a little girl who was born with a rare genetic disorder, and without wishing to embarrass her, I’m in total awe of them both. The way she and her daughter interact is absolutely magical and it does my soul good to see them together.
I can’t begin to imagine what it must be like to carry and give birth to a much-longed for and apparently healthy child only to discover something is wrong, so my heart goes out to anyone who has had to cope with this. Last Tuesday’s incredibly moving BBC1 documentary Having a Baby to Save My Child revealed the plight of two families affected by rare genetic disorders and their extraordinary courage and dignity was utterly humbling. Sadly there are thousands more families across the UK who are also in this situation.
Sunday is Rare Disease Day – a chance to show your suppport for those children and their parents coping with rare genetic disorders. If you’re able to raise funds by a bake sale or anything else I know they’ll be very gratefully received. You can also donate your KidStart savings to GIG, the Genetic Interest Group charity by clicking here.
Thank you for taking the time to read this.
written by Liz Jarvis