To Arlo’s hero

I have mentioned before that prior to Arlo’s diagnosis, CF was already close to our hearts. That is because someone we have known for a big chunk of our lives has CF. He was best man at our wedding and he is very special to us.

I have intentionally not mentioned A much on here as it is not my place to tell his story or share his life - he has always been more than happy to talk about CF and educate those who are interested in it but he is relatively private about his CF and out of respect to him, I didn’t want to post about his experiences with the condition.

So this brings me on to the first thing that really hit home - you never know what someone with CF goes through until you have walked in those shoes or lived under the same roof as them. I have known A since I was 17 years old and I STILL did not realise how complex CF is or how much work it entails. I actually feel quite guilty now for not understanding more about it - I knew A did nebulisers and had chest infections, I knew it was serious, I knew he took pills before he ate his meals, I knew we had to leave venues when there was someone else with CF but I still never ‘got it’. And I now realise that this is because it’s hard to understand CF unless you are in it every day.

And this brings me to my 2nd point - if Arlo grows up facing his CF in the way that A does, then I will be incredibly proud and grateful. How wonderful for A that I see him for everything else before I see his CF. The way that A lives his life - now I truly appreciate the challenges that CF put in front of him (and a lot of it without modulators/the modern drug therapies available now) - is incredible. The positivity, the saying ‘yes’ to everything, embracing life, never taking no for an answer. That is what I hope for when I think of Arlo’s future.

So this goes out to A - thank you for being Arlo’s hero - I know you two may never meet face to face but he is lucky to have a role model to look up to.

We always felt connected to you - and it turns out that DF508 is one of the reasons for that!

We see you, I think I understand more of what you have been through and what you continue to face, and we are so grateful to have you in our lives.