As you may be aware our fabulous Willow has been diagnosed with NF1.

It’s not a very common or well known condition. And only approximately 25,000 in the UK have this condition. So there is still so much to know and learn about. At present there is no cure for her.

It can affect each person differently, and although at present she only displays the the cafe au lait spots that’s not to be said that things can’t and won’t change for her. Obviously we hope that nothing changes but it’s known as the wait and see condition. Where when hormones change people may see the biggest effect on their bodies.

The childhood tumor trust have already done so much for us. They are an amazing charity who send out weekly crafts, organize days out for families to meet eachother, weekend camps for the older children, baking. And the biggest part is the support they provide us. They always answer any questions I have, reassure us as a family and are just the most incredible people. So we would love to give a little back to them.

World NF1 day is Saturday the 17th May so we have decided to walk skirrid mountain ( weather depending ) to help raise some money. And how fitting that it’s also the same month as Willows birthday.

Please if you can help this fabulous trust. Any donations big or small are much appreciated by us, and them.

Diolch