Thank you.

I've had a wonderful week long celebration for my 40th birthday. Thank you so much to everyone who donated online and at the party, raising £400 for the CF Trust on the night, this is the best present! My feet ache from dancing, my ribs from laughing; the usual signs of a good party. 

Isaac, Dan, Auntie Jo and cousin Ben will be running the 5K obstacle colour run on Saturday - you can sponsor them here. Thank you so much for your support friends and family - it really will make a difference, and means the world to us x 

She doth protest!

I will be joining the protest in London (read more here) to campaign for the rightful access to the life changing drug Orkambi for the 40% of CF sufferers that this drug will be suitable for; the first that any of them will have taken that treats the underlying cause of cystic fibrosis rather than just the symptoms. This drug, a so called precision drug, can have a huge impact on quality of life by reducing the amount of time spent in hospital and slowing the decline in lung function experienced by people with CF.

Sadly this is not a drug which will benefit Isaac (due to his class of mutation, which you can read more about here) but this fight is no less personal to me. 

CF friends, as it stands, I am going alone to Whitehall, so if anyone is in the same boat and wants to meet up, please PM me through FB. I'd love some company! 

Have a great day all. You can read more about Orkambi here x

Dreams of you all through my head

We've had a busy few weeks. Isaac is.... OK. We think. Pretty hard to tell. His tummy troubles rumble on, from one extreme to another. Some days we're all loving cuddles and family closeness. Others it's shouting and angst; all otherwise known as the teenage years. Yep, he's only 12, but he's always been one step ahead of most. We can laugh through most anything, but I'd be lying if I said it never made me cry.

It's never easy to explain, but he ALWAYS has a chest infection. In his case, BPA (Bloody Pseudomonas Auriginosa). But this isn't how you might imagine it. Chest infections in people with CF are rarely associated with fever, like we might have. The BPA set up their little camps in his lungs, and it's only when they decide to have a little party down there (known in CF as an exacerbation) that he gets more symptomatic, but that can come on pretty quickly. Right now, his BPA is revealing itself quite clearly in his sputum lab results (doing a little bug twerk in our faces) but chest wise, he is feeling OK. It's like the lull before the storm. All we can do is extra physio, and have extra antibiotics at the ready. We can't always jump on them straight away, as we can't afford to overuse antibiotics for fear of resistance. 

In the meantime, we're out and about having fun. Please, if you can spare a little, sponsor Isaac for his 5km colour run by clicking on the image of him looking handsome and moody to the right. He is so chuffed with the reponse so far. Have a great day x 

 

   

Looking good.

Isaac has had a fairly rough few weeks, but we're hopeful things are beginning to get better. He continues to miss too much school, deals with pain and nausea most mornings, and we're still not sure if he is taking is medication while he's at school (much to my endless frustration and heartache). It's very hard to explain to people sometimes, as within a day or so, he can go from being sick of a morning, to hospital for emergency X-rays, and then back to the football pitch for a training session.... this blog sums up this CF roller coaster pretty well. We take things hour to hour, minute to minute, if he is well enough that moment, he's going...Seize the moment! It is music to my ears when people say he looks well - if only he always felt the same. 

Please please sponsor him for his colour run here, we need a cure to this shitty disease x 

My girlies, Rosa and Anouk (I really don't know what I'd do without these two ❤️). 

 

  

Colour Run

On June 3rd Isaac and Dan will be completing their first 5K run together, including obstacles and a whole lot of colour (details here in case any friends would like to join them?). Isaac is just old enough to do this; the course would be a struggle for any child, let alone a kid with CF with ongoing chest and tummy problems, so please please support him and the Cystic Fibrosis Trust by sponsoring him here.

Thank you so much! x