Meet the Other Phone. A phone that grows with your child.

Meet the Other Phone.
A phone that grows with your child.

Buy now

Please or to access all these features

News

Gordon Brown's son has cystic fibrosis :(

100 replies

hulababy · 29/11/2006 20:03

"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

OP posts:
ShinyHappyStarOfBethlehem · 30/11/2006 13:34

Buffy it depends on the genetic mutation, in many cases, as to how the disease presents and how long a person can go undiagnosed. Clearly this lady did not have profound digestive or respiratory problems for the early decades of her life (and therefore probably has a 'less life threatening' form of CF).

Over 80% of cases of CF are caused by the Delta F 508 gene. My son carries two copies of this. Subsequently he has the potential to have serious lung and digestive system issues. Someone with one DF508 gene and one other type of CF gene may present differently although not necessarily more mildly.

Genes do not tell the whole story though.. lifestyle has a lot do with it, as do many other factors.

When my son was about 5, 'cascade screening' via a simple mouth wash test was offered to the relevant members of mine and ex H's entire family. Ex H has 3 siblings.. he is obviously a carrier (as am I.. having only 1 gene does not cause CF).. one other was also a carrier, one was entirely clear of CF genes and to our shock, one brother was diagnosed with a CF.. a 'different kind' of CF to DS's.. he carried one DF508 and one of the other identified genes (of which there are currently 12 in total) and therefore had a type of CF that had mangaged to diguise itself for almost 30 years. Poignantly, the only 'effects' of his CF that he has ever suffered to date is the infertility aspect (97% of male CF sufferers are infertile) and so far, he and his wife have been unsuccessful in trying to have a baby even with intervention.

DS knows he is almost certainly unable to be a father at least without a lot of 'help'. I told him at a very young age, when he first learned how babies were made, and when he was too young to 'care' so that he would grow up with the knowledge and gradual and not have any nasty shocks.

Similarly, he has gained a gradual knowledge of the life threatening aspect. He has known for a few years that the average official life expectancy still stands at 31 years (this dawned on him when Alice Martineau, a talennted young singer whose career we were following and who died shortly after releasing her first album) died at the age of 30. He asked the question I had always dreaded "Mum.. Alice was only 30.. is that when I'm going to die?" I handled it, as I had planned to, by pointing out that he has managed to stay very well and that he lives in a time of great technological advance and the prospect of gene therapy, and so the official statistics need not necessarily apply to him. (And then, obviously, in private, I balled my eyes out! )

I am really proud of him. He is a fit, clever, gorgeous -looking ((I man be biased! ) well balanced young man in general and he recently got an award at school (on school presentation night) for 'exceptional strength and character'. He and I are very similar and fall out quite a lot.. but I reassure myself that I must be be doing something right.

And the 'good health' thus far I put down to the swimming. DS trains for 4 hours a week.

If I could give Gordon and Sarah one bit of advice I would say "Enrol Fraser in a swimming club.. NOW.. so he can start when he is 4 or 5 years old like DS did." Fortunately, we don't fall out over swim training. He can FEEL how good it is for his lungs.. and he likes the shoulder muscles and the six pack he is developing!

ShinyHappyStarOfBethlehem · 30/11/2006 13:37

That's fab news Buffy

The adult CF sufferer on the Jeremy Vine show was going off an tangent a little I feel, banging on about nebulised antibiotics and DNase.. those are not going to be automatically relevant to newborn babies with CF.

ShinyHappyStarOfBethlehem · 30/11/2006 13:39

(BTW Buffy.. all that blurb I posted below was not all aimed at you.. I know you KNOW most of that.. I was just going off on a tangent too.. lol!)

ShinyHappyStarOfBethlehem · 30/11/2006 13:49

Surely Jeremy Vine is going to come back to this issue!!! Buffy and I need out email points addressed FGS!!

Standrewssaltire · 30/11/2006 13:58

I was a bit shocked at some of the tabloid headlines today - not the sort of thing the Browns would want to see, nor i imagine would any parents with recent diagnosis of CF want to see.
Can i just ask a question, and apologies for my ignorance. CF is an inhereted condition, so why is it that not all children in a family get it?

misdee · 30/11/2006 14:01

\profile.myspace.com/index.cfm?fuseaction=user.viewprofile&friendid=17560980\listen to Alice MArtineu here}

She died whilst waiting for a transplant

ShinyHappyStarOfBethlehem · 30/11/2006 14:07

Saltire, it takes two carriers to make a CF baby, and even then there will only be a 25% chance of the carrier-parents having baby with CF for each new pregnancy.

(Also, for each pregnancy, there will be a 50% chance of giving birth to a carrier.. like the parents.. and a 25% chance of producing a baby with no CF genes at all.)

A carrier is symptomless and does not actually have the disease. One in 25 people of the caucasion population of the UK is a CF carrier, many of us without knowing it.

And re the headlines, the Browns will have been pretty much familar with all the dire scenarios since July, I doubt their heads will have been in the sand. CF doesn't really allow you to do that.. you are straight in at the deep end. When DS was diagnosed I made about 6 drug charts and posted them all over the house in the hopes that I would learn to to what I saw as the impossible and remember it all by heart.

I actually knew it by heart within a week. It was the doing it not the reading about it that taught me. It becomes part of your life very quickly. I think it's quite important to let it not become a CF family's whole life though. Children with CF have a lot of 'do' (and have 'done to them') each morning, evening and at several parts of every day, but they can actually have perfectly normal childhoods 'around' all the CF stuff.

ShinyHappyStarOfBethlehem · 30/11/2006 14:09

Weirdly Misdee, I got her album out and started playing it a few days ago. I had barely played it since she died.. it did my head in And now CF is all over the news.

I expect other parents feel the same.. but it's really weird.. it's as if it part of our lives all over the news.. suddenly everyone wants to know about CF. I feel as if we need to seize this opportunity..

misdee · 30/11/2006 14:14

i have her album in my car. its been pushed out this week for my chemical romance.

Standrewssaltire · 30/11/2006 14:15

Thank you shinyhappy for explaining it to me.
You are probably right about the headlines - and judging by some of the rumours that have been flying around about them they were probably expecting it. I was thinking more of parents who had recently had a child diagnosed with CF - they might have been saddened or angered by some of the headlines.

misdee · 30/11/2006 14:16

and sieze every oppertunity possible.

misdee · 30/11/2006 14:18

try again

i am planning on using 'inside of you' for a montage post transplant.

ShinyHappyStarOfBethlehem · 30/11/2006 14:20

Inside Of You is the track that really stands out on the whole album isn't it! I bet listening to that does you head in doesn't it Misdee??? xxxxxxx

(It would make an excellent sound track to a post transplant montage )

ShinyHappyStarOfBethlehem · 30/11/2006 14:24

Oh well done for that link!

*Everyone& I demand you use Misdee's link and listen to Alice Martineau's track Inside of You. It was never released as a single (If I Fall did ok in the charts shortly before she died) but Inside Of You was written by Alice for her boyfriend about what she imagined might be the case after her death.

She wrote all the songs on the album and she spaced the music deliberately in a way that allowed her to take a big breath between each line of lyrics, as breathing was such a struggle by then.

ShinyHappyStarOfBethlehem · 30/11/2006 14:25

I am getting off the pc for a bit.. I feel all weird and emotional about everything CF related today...

misdee · 30/11/2006 14:26

Inside of You had me in tears when i first heard it. Its an absolutly brilliantly moving song, the whole album is fantastic. Whatever happens, that track will be used.

misdee · 30/11/2006 14:34

actually listening to it now, and am blubbing slightly.

RubberDuck · 30/11/2006 14:41

Just listened to it and holding back the tears. Have put the album on my amazon list. She's got a beautiful voice, thank you for sharing the link, misdee.

misdee · 30/11/2006 14:44

rubberduck, can you pass the link on to as many people as possible

RubberDuck · 30/11/2006 14:51

I'll try I think you've got mumsnet covered though

buffythenappyslayer · 30/11/2006 15:51

i ahve to admit shiny,ive been feeling really emotional all day aswell.i dont usually talk much about the cf part of our lives,but today with it being in all the papers and the news,and on mn,its just been hard to not think cf!!(if that makes sense!)

you just get on with it dont you,all the medicines and physio just becomes a way of life,part of your daily routine,but its not often you get to think deeply about cf.

dd ahs been very clingy today,so shes given me more cuddles which has been lovely.at the moment,shes leaning against me while i type!!

i do hope taht having cf brought to the forefront like this,will make people more aware,and hopefully more money will be put into research for a cure.

shiny,dd has the 508 and 1078 mutations (just got the letter out from the hospital when we first got told!)

FioFio · 30/11/2006 18:22

This reply has been deleted

Message withdrawn

hannahsaunt · 30/11/2006 18:23

Radio interview went really well but hate having it in my head all day - our/their normal with the CF stuff being the routine we work around with them is just normal and life isn't about dwelling on the hard aspects but today it's been there.

Dn's have a particularly rare form of CF and (2 out of 3 people in Scotland with it) and as such it's particularly nasty. Dn1 was desparately ill even by about 6 weeks when the dx was first mooted after the Guthrie - she lost weight continuously post birth and it was awful. Both have had salt therapy but there seems to be a lot of humming and hawing about the usefulness of it. Dn1 has the DNase nebuliser and spends a lot of time in hospital. That said, she is the most active, mischevious imp and absolutely adorable - has the hospital wrapped around her finger! Dn2 seems to be doing better mainly because she was on meds from day 1 in anticipation of the dx so didn't have the critical weight loss and is much more physically robust (even is she is about to spend 2 weeks in hospital for prophylactic IV antibiotics).

FioFio · 30/11/2006 18:41

This reply has been deleted

Message withdrawn

ShinyHappyStarOfBethlehem · 30/11/2006 19:32

Well done Hannahsaunt I am crap on the radio so I'm sincerely glad nobody contacted me (I don't have the nerves for it these days.. did local radio twice re CF when DS was small)

Did anyone just see lovely Emily on the telly? The kids were jumping up and down with excitement as was I saying "That's my friend!! )

Emily's blog

Misdee has one too by the way!

New posts on this thread. Refresh page
Swipe left for the next trending thread