Hope: we're not throwing away our shot

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When you live with the realities of CF you can feel helpless. You constantly worry and try to guess what impact it will have on your daughters life. You worry about how you will explain to her  that she has a condition for which there is no cure.  

You search for ways you can help & encourage her to try to live a life unlimited.  

You cling onto hope and try not to think about what her future may hold. You try and live in the moment and to recognise when you are in a good space - when health is good and treatment going well.



 We don't want Eloise to feel like she is running out of time.

We will bleed and fight for our daughter. Hope is essential to helping us to keep a positive attitude & mindset.  Hope that new drugs, new research will mean we can say that CF means Cure Found. That would be enough.

We put our hope into the hands of strangers - people working in research, people working for pharmaceutical companies, the CF Trust and the CF community who continue to inspire us.

This petition for Orkambi was started by parents of children with CF. It gathered so much momentum & support and as a result it will now be debated in parliament.

Our secret weapon lies within all of these people. To help these people and organisations succeed we are joining them - we are going to try and turn the tide, to raise money which will fund vital research. We are in their corner. 

Along with an inspiring group of ladies I am standing with pride and I am taking on a huge challenge. We are taking part in the CF Trust Great Strides event in North Yorkshire. Walking a massive 40 miles in one day, we may need to take a break! 

 Asking for help doesn't come naturally to me, but wait for it...I am asking on behalf of Eloise, on behalf of the CF community. 
If you are reading this, and if you have any pennies to spare please, please consider sponsoring us. Anything you give will be enough. Every penny will make a difference and will no doubt motivate us to train and complete this challenge.
We will keep you updated with our training - you will feel like you were in the room where it happened.

And finally, have you noticed anything? I am obsessed with Hamilton the musical and am going to see it very soon! I have weaved Hamilton lyrics and song titles into this post? How many can you spot?

Wouldn't it be amazing to have Lin-Manuel Miranda on our side and let him be part of the narrative that leads to a cure found!

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