Gordon Brown's son has cystic fibrosis :(

[hulababy]

"Chancellor Gordon Brown has confirmed that his four-month-old son has been diagnosed with cystic fibrosis. "

What a sad, stessful blow to come to them, especially having already experienced the tragic loss of their baby daughter 4 years ago

For some reason I thought they lost the one (DD) then had DS, the one diagnosed with CF. Obviously there was another one born somewhere. I must of been on anothe planet at the time.

How very sad.
My DS went all the way through pre-school and primary school in the same class as a little boy with CF. Sadly he died age 13 whilst on the waiting list for a heart/lung transplant.

Fio, Scotland has a CF screening service for all newborns which is probably why it's been picked up early.

One of the men on Robert winston's programme last night had cf and with a little bit of help had just fathered a child. He was fit and well.

It is better than it was and will continue to get better (hopefully). Gene therapy trials are planned to start in Edinburgh next year but it's still terribly early for long term benefits. Including it in the Guthrie test is great up here - so sensible. I don't know about other LHAs but Edinburgh/Lothian is extremely good - I have 2 small nieces with CF and the team is fantastic.

And like someone said, he's still their baby...and the overwhelmingness of it from an adult perspective gets swallowed up most of the time as the children get on being normal little people.

very sad when I heard this - they've really been through it haven't they?

Heel prick is immediately what I thought of too Fio. Now maybe at last they will get their arses into gear and start testing all the newborns in the UK so that it's neither a geographical lottery.. or you have to wait until your baby is either starving to death from malabsorbtion (like DS1 was) or is symptomatic with lung infection (and possible damage).

I wouldn't wish CF on any family.. but seeing as one baby is in the UK is diagnosed every day, at least with it being the Browns, it is FORCED into into the public domain.

Perhaps something will also be done about the fact that those adults with CF who are well enough to work are having to spend half their wages on prescription charges! (But I won't hold my breath on that one..)

It happening in some parts of the Midlands I believe

Tony Blair promised it would happen in the WHOLE of the UK when he came to power. Sigh.

And looked well into his thirties IMO robinpud. I was so thrilled for them when Li got pregnant
I was at school with a child with CF whose short life was full of ill-health and sadness (late sixties) . Fraser's outlook is so much more positive. Our next-door neighbour's son has CF and is a fit and healthy teenager, but I know the worry of living with his condition has taken a heavy toll on his mum and dad. It would be so wonderful for a cure for CF to be found sometime soon.

Early diagnosis is really important. I've seen several CF families where the oldest child with CF wasn't diagnosed until late and was quite badly affected, while subsequent children were tested at birth and (if affected) treatment started right away. It makes a huge difference to their general health and to the prognosis.

A childhood friend of mine with CF is now (we've lost touch, but I ran into his mother the other day) in his late 30s, happily married with a DD and in pretty good health even without having ever had a transplant. Not all family friends with CF have been so lucky and a couple have died in or before their early 20s while on the transplant list, but it needn't be all doom and gloom. I certainly hope it works out well for the Browns.

My 14 y/old is a gorgeous strong healthy stroppy hormonal teenage boy (with lots of girls after him .. but it takes a hell of a lot of hard work to keep him that way.. (well.. not lusted after by teenage girls! That part seems to come naturally.. don't know where he gets it from.. )..

..especially (re hard work!) when you catch him merrily flushing his nebulised antibiotics down the sink.. and admits he had been doing it for a week! (So it was probably longer!!)

No wonder I have grey hair coming in...

At the moment Fio, working people with CF can only get part of their prescription charges paid (I think it's still called being a green card holder?).. unless they have a port-a-cath insitu

they are rolling out newborn testing in some parts of the UK

think there's some info on the cystic fibrosis trust site somewhere

cystic fibrosis trust on the front page in the news box

not the whole of the UK yet it seems

I immediately thought of you when I read this ShinyHappy. I am very sad for the Browns, but I really hope that this will have a positive impact on public awareness of CF, that it will mean that every baby gets tested, regardless of postcode, and that, perhaps, in the not-too-distant future a cure will be found, or, failing that, better therapies which will help all people living with CF to live fuller, healthier, longer lives. (And FWIW I hope that Gordon Brown does go on to be PM. I hope his son learns from his dad to aim high, not to give up... and if necessary to be patient, because the route to where you're going may not be easy, but it's always worth setting out on the journey.)

Prescription charge system in general is loopy.

My brother had his thyroid removed, so needs thyroxine (just one prescription medication, I think) -- all his prescriptions are free no matter what they are for.

My father has Parkinson's and needs to take about 4 different medications daily, with some additional things to have on hand for special circumstances. He has to pay for his prescriptions.

And then with the whole CF situation... it's madness, really.

Yes, was going to say that Lemonaid. My other DS has hypothyroidism (as well as a sh*tload of other things ) and will NEVER have to pay for HIS medication even though it's a bog standard condition and not even life threatening.

Diabetics get insulin free.. which I can understand.. but not suffers of CF!

The next general election will be between two fathers of young children with a disability/chronic condition. That's interesting, I think. Bet it changes their priorities.

DH and I were just pondering on that. And the fact that we have both of those conditions amongst our kids..