Life without a Label is a Rare adventure indeed

Hi I’m Emmy, I am a mummy to 3 wonderful childern aged 9, 10 and 16.

And we are a rare family!

By Rare I am talking about Rare disease, Rare family life, Rare highs and Rare lows, Rare challenges and Rare achievements.

I’m writing this blog with the hope that our story will help promote and raise awareness about what it’s like living day to day with Rare and also to reach out to other families who, like mine don’t tick all the boxes when it comes to an overall diagnosis, that “magical label”.  We are very much living in a round hole world, but we are square pegs and that means we just don’t fit!

I am blogging about all aspects of our lives, from the battle that comes with having 2 children with special educational needs to the emotional rollercoaster we are on while we hunt for an overall diagnosis for our youngest son.  Since starting this blog our daughter has been diagnosed with an extremely rare form of seizure migraine, brainstem migraine with aura.  I will be sharing my research on this condition and any coping mechanisms we find along the way.

I hope you can join me on this Rare journey and help us reach out to other families who might be feeling lost and alone. There is a Rare movement happening right now and im very proud to be a part of it.

I hope you enjoy reading about our life without a Label.  I can promise you it really is an adventure!!