The Power of One Man...........

Not sure where I am going with this so stick with me please!!! I know there are a lot of people out there who read my Blog who I don’t know, so a big hello to them! Maybe they don’t know that my gorgeous son has cystic fibrosis, which is a genetic disease (hate that word) which affects the lungs. As you can tell from all the photos, Finn is incredibly healthy at the moment and we intend to keep him that way!! He is like any other almost 2 year old. He was on daily antibiotics but hasn’t been on those for a while as he hasn’t had any infections. (Touch wood!!) He has regular check ups to make sure he isn’t growing anything nasty.
We don’t make a big deal out of his cf, (see it even has small letters, I refuse to allow it capitals) which is why you won’t really find me mentioning it. OK, a small part of me may have my head in the sand about it, but also it doesn’t seem fair to Finn to have him ‘judged’ on something and treated differently when there is really no need. We refuse to wrap him up in cotton wool.
We discovered he had cf when he was two weeks old as his newborn heel prick test came back positive for it. A huge, massive shock, as it is genetic which means both Justin and I have to carry the gene to pass it on. We had no idea we did! Luckily Finn did have the newborn screening as he has been so healthy, we wonder when we would know he had it. A lot of children aren’t diagnosed until later on in life.
Luckily (not the right word!) cf is the most common genetic disorder in the Western world and there are huge plans in the pipeline for a cure as it is a life threatening condition. By 2012 it look like gene therapy will provide the key. Finn will be 7.
Another possible cure maybe through stem cell transplants.
When I was pregnant with Finn we looked into the possibility of saving his umbilical cord blood (his stem cells). I knew that, God forbid, he developed cancer one day, he could use this to have a bone marrow transplant and the research going on to treat other illnesses meant in a way it was a insurance policy. I read a few leaflets, did some reading and ummmed and ahhhed about it. We decided we would find out about the cost before we decided anything. I rang one place who were having a special promotion. It would cost ₤17 to collect it (has to be collected immediately the baby is born), free for the first year to store it and ₤70 a year after that. As Justin said at the time you could spend ₤70 easily on a meal out. So we went ahead and had it stored.
When Finn was diagnosed, it didn’t even cross our mind we had stored the stem cells, then as we did more and more research into the cure……there it was in black and white……..all the research. Finn is one of the very few sufferers who has his cord blood banked and we have made people in the know aware of this as we are happy for him to be a guinea pig!
I find it incredible we have his stem cells tucked away in a lab. Maybe nothing will come of it, but the work going on is incredible. Not sure I really believe in things happening for a reason anymore as so much stuff has happened to people I know and love, but sometimes, just sometimes, I think….yeah that was meant to happen.

Why am I going on about this now?????? Without meaning to offend anyone, George Bush pisses me off. Big style. This week he used his presidential right to veto a bill that was passed to fund stem cell research. The Americans were going great in their research, not just for cf, but for alzheimer’s, diabetes, parkinson’s…….and yet one man’s personal beliefs can change all this. Polls show most Americans disagree with the ban and that he is losing voters because of it….bloody good I say!!!!
When you are on the other side and it is your child who needs a cure you will do anything, anything to get it and you are stopped in your tracks by a bigot.
Luckily, lots of the clever people, have gone over to the UK to carry on the incredible work they are doing. I thank them lots!!