A chance to help very special children and their families

Feb 22 • Featured, Uncategorized • 993 Views • 4 Comments on A chance to help very special children and their families

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


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4 Responses to A chance to help very special children and their families

  1. Crystal Jigsaw says:

    People need to be made aware that not all children are born perfect. And even if they are, it doesn’t mean they will go on to be so. In a parent’s eyes, their child will always be perfect, of course, no matter what disorder they live with. But support has to be made available to these children, and their families. Thank – you, for writing this. CJ xx

  2. Sandy Calico says:

    My brother had a rare genetic disorder. Thanks for highlighting this, Liz. Award for you at mine: http://sandycalico.blogspot.com/2010/02/secrets-sunshine-and-being-published.html

  3. nappyvalleygirl says:

    Well done for writing this. A good friend’s baby was born with a rare genetic disease – sadly he did not survive but if he had, her life would have changed irrevocably.

  4. angelsandurchinsblog says:

    Thank you for highlighting this. One of my NCT buddies’ babies was discovered to have an extremely rare genetic disorder. A huge shock to the family concerned, who didn’t realise anything was wrong until the baby reached nine months old. Often, families don’t find out till the child is even older.


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