One Year of Blogging!

When I set out to do this I had a vague idea of what I wanted to achieve but little did I know a year later my website would have grown and reached so many people all over the world. Before I started I felt as if I wasn’t doing anything to help Harriet. Everyone started fundraising really quickly, everyone was doing something except me, her mam. I had read blogs and watch way too much YouTube so thought I could possibly start something to raise awareness of cystic fibrosis.


I was so nervous before I shared my first ever post, Harriet’s Birth, and sat watching the viewing figures go up and up; it was crazy. The amount of support and well wishes I received on the back of that first post was really overwhelming. Until Harriet’s diagnosis I wasn’t even on Facebook! Now I think I’m in every single CF related group going as I have such a fear of missing something. I want to be in the know immediately when news breaks of game changing treatments and potential cures. That’s the frustrating thing with CF, it seems so fixable yet it is an invisible illness which still claims way too many young lives.


My initial aim was to be there for parents faced with a new diagnosis of CF. I found nothing but doom and gloom online when Harriet was diagnosed and would have loved to have read about a family’s journey like ours. I honestly thought our lives were over but I was so wrong! I learned about CF Parent support groups from my blog and I cannot over-emphasise just how invaluable they are. To have friends all over the country, going through the same things, ready to listen and offer support and advice at a moments notice is amazing. We are so lucky to have such brilliant technology! I have had messages from people all over the world and keep in touch with so many. The Online CF Community is a great place.


So what have I achieved in a year of running a website? I’d like to think I’ve done what I set out to do in that I’ve given comfort to parents in hospital living the nightmare we did. Especially as Harriet was born with meconium ileus and had to have numerous operations, I have had messages from people going through the same thing because like me they sat in the hospital, Googling like crazy. For me that is more than enough to let parents know that they will get through it and, as awful as it sounds, that CF will become just another part of normal family life.


My other intention was to provide updates on Harriet and how she is doing for all of our family. It’s such a lovely way to keep family members who are not close by up to date with how she is getting on. As we fundraise a lot I thought it would also be a great way to publicise events, ask for donations and support. We have received this in droves. We have a quiz night coming up and have been offered some fantastic raffle prizes already on the back of last week’s appeal post. Keep them coming please! I don’t have an exact figure on how much we have raised in the last sixteen months but I would hazard a guess at something in the region of £11,000. Unreal. I feel like thank you just isn’t enough.


Another thing I had not intended to do was be an advocate for organ donation. I have always been registered myself but last year I was brave enough to read about people who have been given the gift of life and decided to try and get as many people I know to sign up to the organ donor register. I still can’t really contemplate my baby being in such a state of ill health that she would need a lung transplant but so many people die waiting for organs to become available which is just heartbreaking. For me it’s a no-brainer. Thankfully loads of people agreed and signed up! I couldn’t believe how many family, friends and strangers all messaged me to say they were now registered organ donors!

Finally, I have also started to help campaign for precision medicines. First of its kind medication is now available to CF patients with Harriet’s mutation (DDF508) which attempts to address that root cause of CF. Sadly it comes at a very high price and I suspect that it will not be approved in this country. Although Harriet is too young for this medication there are thousands whose lives could change so I will continue to be asking for signatures on petitions and whatever else comes along!


Like I keep saying in twenty years time I want to be able to say my daughter HAD cystic fibrosis meaning it has been cured rather than it taking her away from us. Stick with us, keep reading, sharing and supporting and be a part of making CF a thing of the past.

THANK YOU ALL SO MUCH!!!

To read more about cystic fibrosis and ways in which you could help click here.

To sign the organ donor register click here.

Fundraising Update

It’s been a while since I last posted on our fundraising efforts and obviously these are THE most important posts so here goes…

The next big event is a quiz night at Boldon Cricket Club, East Boldon, Friday 4th March. The night will consist of a quiz followed by live music starting at 7pm. Anyone wishing to purchase tickets please let me know or a family member. It would mean the world to us to see our friends there supporting our cause. Get a team together pronto!! If anyone would like to donate a raffle prize we would be extremely grateful. Do you work somewhere that could offer a voucher? Do you know anyone who owns a business that could donate something? Do you have a spare bottle to offer for our drinks hamper prize? Anything, no matter how big or small, it all helps. The last two quiz nights have been fantastic and have raised an awful lot for Cystic Fibrosis research so here’s to another amazing night, hope to see you there.


The ballot was drawn this week for The Great North Run and I know of a few people who were disappointed to not get in. Why not run for The Cystic Fibrosis Trust? A guaranteed spot in the worlds most prestigious half marathon for a pledge of £325 in sponsorship. I know this sounds like a lot but I am pretty sure that the amount is higher for other charities so choose us! Please! Last year the atmosphere just being in the crowd was phenomenal, we stood out for most of the race cheering on all the runners, spotting the CF Trust yellow vests. My husband and sister in law are up for the challenge again, they did so well last year! This year Chris is going for under two hours – just putting it out there publicly for him haha- might spur on his training efforts!


Recently I was gifted two theatre tickets to sell by a very generous lady who is a great supporter of our fundraising. With the  help of our lovely CF North representative we managed to raise a whopping £178 not bad when we were initially going to sell them off for a lot less. Thank to everyone who bought a bonus ball and I hope the winner has a great night- not bad getting a pair of tickets for £3!

We continue to collect stamps for The Stuart Gordon Fund. I don’t think a day goes by without someone telling me they have stamps or their workplace is now collecting for us. It doesn’t sound a lot but it all adds up and helps fund vital research. Click here to download a poster to put up where you work please! Thank you to everyone who continues to keep them coming too!

In twenty years time I want to be able to say that my daughter HAD cystic fibrosis meaning it was cured rather than it taking her away from us. Please help us make CF a thing of the past.


Finally, there’s only a few days left to sign this petition for access to precision medicines for CF sufferers. If you haven’t already signed please spare a few minutes as every single one can make a difference. Click here.
To find out more about Cystic Fibrosis and the ways in which you could help click here.

 

I Hate Cystic Fibrosis

This week I was supposed to write a non-CF related post – I do try! I was going to review some place or other but, if truth be told, for me those posts are classed as fillers; stuff to stop me banging on about cystic fibrosis even though that is my sole reason for doing this. Well, I’ve just had a bit of a moment. I got upset for the first time in a long time about CF as Harriet is unwell at the moment, and she’s not responding to extra medication. Don’t get me wrong, she is absolutely fine in herself, happy and eating, but the cough is not shifting.


Thankfully her cough swab from earlier in the week was clear at the time of writing this so so far so good, and it’s hopefully viral? I don’t know. I often wonder whether I’m just incredibly naive in thinking that she’s going to be fine all the time. I allowed my mind to wander to the bleak prospect of her having to be admitted to hospital for intravenous antibiotics and started to cry. I can’t face her having to have another long line put in (if that’s what they would do) She had one put in after her stoma reversal and to be honest when they asked our permission to do it I didn’t really understand how awful it would be, how it would leave scars, how they took her away from me to pull it out. Maybe they would just use a cannula? I don’t know but what I do know is that I don’t want her to have to go through that procedure again. Again, maybe I am just being naive here and should just accept that this is the deal; this is what I should expect with CF.


Tomorrow we start a different antibiotic which is something we have never had to do before. Yes, Harriet has had lots of courses of extras but she has always responded really well and got better after a few days. This time, a week in, her breathing is still very noisy. Does anyone else’s little one experience this? Every time she has caught a cough and a cold her chest just sounds so loud when she breathes, as if she has so much going on in there. The only positive in all of this is that I am finally able to carry out successful physio sessions now thanks to Peppa Pig on the iPad!


We now have until Tuesday to improve or I fear it’s the hospital for us. Along with the horror of putting my gorgeous, happy little baby through this I also need to think about my big girl who also needs her mam at home. I HATE CF. Now more than ever I feel like we need more ideas for fundraising; anything we can do to help all of the amazing research going on to stop all of this happening to my girl and all the others out there. Please if you have any ideas for new ways to raise money, please let me know. We are looking for raffle prizes for an upcoming quiz night so anyone who could donate, or if their workplace could kindly contribute something then that would be greatly appreciated. Please keep Harriet smiling.

Spare a few minutes of your time to sign this petition for access to precision medicines that target the cause of CF rather than just treating the symptoms. They would help Harriet and many others to live a longer life unlimited by this disease. Click here.
If you want to find out more about cystic fibrosis click here.