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.