We have been in and out of hospital with our little princess Dollie. After waiting for test results to come back our little girl has been diagnosed with a condition called Aicardi–Goutières syndrome SAMHD1 which is a very rare genetic condition, unfortunately it means she is terminally ill and we have no idea how long we have with her, so we want to make everyday as special as possible for her, We have also just received results back from tests carried out on my 4 year old boy Leighton which have come back positive for Aicardi–Goutières syndrome, he has a mild form of AGS which will see his mobility become less and less as he grows, its still very serious and could take him away from us at any time, he will need to be observed very closely to make sure the Vessels to the brain are as they should be.

We are spending time at Martin House Childrens Hospice who do an absolutely fantastic job of supporting parents like us and children like Dollie. We will be planning a lot of fund raising for them and would appreciate it if people would get involved to contribute towards this great charity. Thank you for all your kind messages of support

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