An Introduction

Hi, I'm Rebecca, Adrian's wife, and I write a blog about our family at Life as a Mum to 2 Children with Cystic Fibrosis.  I've set this training blog up for Adrian and Rhiannon to use, so you shouldn't see any more guest posts from me, but just to kick them off, as they're both newbie bloggers, I'm writing them an introductory post.

Okay, so ... what's this blog all about?

It's about ... my husband Adrian: Seren and Dylan's Daddy ...

 

It's about ... my sister Rhiannon: Seren and Dylan's Aunty ...

It's about the Cystic Fibrosis Trust

And it's about the Fylde Coast Marathon, which is being held on 27th February 2011.

Neither Adrian nor Rhiannon have ever run a full 26.2 mile marathon before, and apart from recreational jogging along the local beach, Adrian has never done any running before.  Rhiannon is a little more experienced, having done the Santa Fun Run at Old Trafford in Manchester for the Cystic Fibrosis Trust in December 2009, and the Blackpool Half Marathon of 13 miles in April 2010.

But for both of them, it will be their first full marathon.

But they have a fantastic cause to do it for, and fantastic motivation to keep running, because they are doing it for two very special people.

Seren and Dylan.

Seren and Dylan have Cystic Fibrosis.

Their life expectancy is not the same as the average person's.  50% of people with CF can hope to live to just 38 years.  The other 50% won't make it anywhere near that far.

In the past few days, Conner passed away from CF at just 7 years old.

That just shouldn't be able to happen.  In these days of medical advances, with incredibly intelligent scientists, and sophisticated medications, children shouldn't be dying of Cystic Fibrosis.

But they are. 

Three young lives are lost to CF in the UK every week.

And why are they dying?

Because to date, there is no cure.

No magical medicine which will take away the lethal effects that CF has on the lungs of every CF sufferer.

And so, every day, Seren, Dylan and the many CF sufferers around the world have to endure inhalers, nebulisers, chest physiotherapies, coughing up foul sticky mucus from their lungs, and they have to take what feels like a million and one tablets and liquid medications. 

It isn't actually a million and one, it's more like between 28 and 30 tablets a day for Seren, or a total of 37 to 53 doses of medication (liquid and tablet) per day.  And for Dylan, it's more like 25 tablets, or a total of 32 to 43 doses of medication (liquid and tablet) per day.

You try and imagine what that's like.  To be five years old, or seven years old, and to have to ingest between 32 and 53 separate doses of medicine a day.  Most children don't have to take any regular medications in the day at all.  I certainly didn't as a child.

But for Seren and Dylan, that has been their life since diagnosis, which came at eight and seven days old, respectively.  For as long as they can remember, they have coped with having spacer masks squashed on their faces; with having their chests pounded repeatedly to shift the horrible mucus which clogs their lungs; with having steaming nebuliser masks pressed against their faces for up to 45 minutes at a time; with having to learn to swallow capsules at just three years old; and with having to swallow foul-tasting liquid medicines multiple times per day.

Just to try to stay alive.

But it doesn't always work so well.  Despite our best efforts, they often get sick.  Chest infections are a frequent issue with CF sufferers, and a constant fear.  Dylan has had to endure 19 courses of intravenous antibiotics to fight the chest infections which were knocking him flat so often as a baby and toddler.  He had surgery to fit his first portacath under the skin of his chest at just 9 1/2 months old, because he'd had so many IV lines put in that his veins were worn out already.  It's sad that he doesn't remember ever not having a port.

Seren was lucky, her chest didn't bother her much until September 2008.  But it's making up for it now.  She's had some nasty infections since then, two of which have required hospital stays and intravenous antibiotics. 

Trust me - seeing your six or seven year old child struggling to breathe because their airways are clogged with infected mucus is not fun.  Seeing the terror in her eyes as she realised she couldn't take in any oxygen is something I will never forget. 

The first time it happened, in a hospital corridor, when she had her first big chest infection and she coughed up a chunk of mucus so big that it lodged in her airway, she ran to a window and stuck her head out to try and get some air.  She didn't understand that the problem was inside her, not in the corridor.

Seeing your child lying on a bed in the treatment room, coughing desperately to try and clear their airway so they can drag in a breath, but unable to move because the doctor is in the middle of pushing a tube up inside her arm towards her heart, is also not fun.

So how can we stop this happening?  How can we help Seren and Dylan, and all the other CF sufferers around the UK?

By donating.

By helping the CF Trust to find that life-saving cure.

By holding Cake Bakes, and selling calendars, and doing sponsored walks to raise money for the CF Trust.

And by running this marathon.

Rhiannon and Adrian are committed to training for 8 months and running 26.2 miles to raise money for the CF Trust.

What do YOU have to do?

Donate to their justgiving page, using the widget at the top of the page.

Thank you.

(Posted by Rebecca)