CF AWARENESS WEEK

I thought I'd post today as it's the first day in CF Awareness week in the UK.
CF is a genetically inherited and there are 5 babies diagnosed and two young people die every week from the illness. To suffer from CF both parents have to be carriers of the gene, or you could just inherit the gene and be a carrier yourself. Unless CF is known about in your family, it could pop up any time if two carriers meet, marry and have children. There is then a 1:25 chance in each pregnancy of the baby being affected by CF. If it's known in the family at least you can make an informed decision about having children. In our case, CF popped up in Rebecca and having looked back in the family, we could guess but only guess who may have had it. 

I am eventually doing a tab on this blog about how CF affected us and what it was like for Rebecca and us to live with, so I've decided to let you read the blog below, which is from another person with CF who is currently using a new drug that's been developed and seems to be having a good effect on CF. Unfortunately, this drug can only treat 5% of the CF community which isn't a lot. This is the reason I pester you all to support my fund raising so that other drugs can be developed to treat ALL CF sufferers.

http://cocktailsandcreon.blogspot.com/

You will hopefully see some pictures in this blog of lungs as they deteriorate and you'll see how bad they look at 35% capacity, Rebecca lived with lungs at this percentage for probably the last 12 - 18 months of her life and believe me it was a struggle. So please have a read of the guest blog and spread the word whenever you can.

I have built the blog a little more so it's coming along but it will be a while before it's finished.
Thank you to anyone who has a read.
Tara for now XX

Today we got up at 4.50am and did a car boot sale to raise some funds for the cricket match on 1st September. We raised £87 so it was well worth going, this will appear in the fund raising tab at some point.
Managed to do some more tabs for the blog so am cooking on gas now, my Bec would be proud I've managed to work it out. Tara for now X

Trying to set up this blog

It's taken me 4 years to decide to try and design this blog.
My intention is to write about my lovely daughter Rebecca (Becci) who I lost to Cystic Fibrosis on 10th June 2009.
I intend to talk about Becci and remember her ALWAYS
I intend to talk about CF and how it affected Becci and me, my hubby Paul and our family.
I also intend to talk about how I've been since she got her Angel wings, warts and all. I did write my thoughts down in the early months after losing her and I will write those thoughts on here.
I have also included a section of the fundraising being done in Becci's memory for CF and I intend to make this a big part of the blog. I want to raise awareness and try to encourage people to support CF. This illness needs to be cured and until it is, many young people will continue to die at a young age and families go through the devastation of losing a child
My blogs will be my thoughts, they will be honest and some might be upsetting, but I will use this as a way of dealing with the loss of my only child, something even now, 4 years on, I struggle to deal with.
It may also take some time to build the different sections of the blog because I don't have the IT knowledge to do it on my own and Becci isn't here to guide me. She'll be laughing at my antics on a cloud over her rainbow.:):)