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The Richardsons, Miriam and Cystic Fibrosis

Miriam was barely a month old when we discovered she had Cystic Fibrosis, one of the UK’s most common life-threatening genetically-inherited diseases.  We were both carriers of the faulty gene, although we didn’t know it and there were no known cases of CF in either of our extended families.
We were so proud when the Thunderyaks team announced that their Mongolia Rally 2013 adventure would be in aid of the Cystic Fibrosis Trust.  We hope you can support them in their brave quest!

Miriam Thunderyak pic 

 

What is Cystic Fibrosis?

  • It is caused by a faulty gene that controls the movement of salt and water in and out of the cells within the body.
  • Cystic Fibrosis affects the internal organs, especially the lungs and digestive system, by clogging them with thick sticky mucus. This makes it hard to breathe and digest food.
  • Over 9,000 people in the UK have Cystic Fibrosis.
  • If two carriers have a child, the baby has a 1 in 4 chance of having Cystic Fibrosis.
  • Over two million people in the UK carry the faulty gene that causes Cystic Fibrosis - around 1 in 25 of the population.
  • Over 95% of the UK CF population is Caucasian, but CF affects many ethnic groups.
  • Each week, five babies are born with Cystic Fibrosis.
  • Each week, two young lives are lost to Cystic Fibrosis.
  • Currently half of the CF population will live past 41 years of age, and improvements in treatments mean a baby born today is expected to live even longer.

Symptoms

CF covers a range of different genetic variations, but the main symptoms of CF can include:

Lungs

It is common for people with CF to encounter some difficulties with their lungs. A combination of physiotherapy and medication can help control lung infections and prevent lung damage.

Digestive system

Cystic Fibrosis affects the pancreas, which makes it difficult for people with CF to digest food. There is medication that can compensate for the failure of the pancreas.
In older patients, insulin production can become deficient due to increasing pancreatic disease. Some develop CF related diabetes mellitus and their blood sugar levels are no longer controlled. This rarely happens to children with Cystic Fibrosis.

Treatment

As a family Miriam’s treatment is part of our everyday routine.  This includes physiotherapy, extra exercise, a range of medications and a careful diet.  When she has a cough or cold, additional treatment is required to make sure it doesn’t cause bigger problems.
There is currently no cure for Cystic Fibrosis, however there have been many exciting developments in gene therapy.  Trials for a gene-therapy treatment used on one of Miriam’s genotypes has recently started in the UK with great results.  Her specialist CF team has been a fantastic support as have the Cystic Fibrosis Trust.  However fundraising support is vital to support the families who need it most and fund research into treatments which we hope will improve the quality of life of sufferers and give them the best chances for the future.
Thunderyaks
We were so proud when the Thunderyaks team announced that their Mongolia Rally 2013 adventure would be in aid of the Cystic Fibrosis Trust.  We hope you can support them in their brave quest!
Charly, Ruth & Miriam Richardson

 

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Romania

So today we set off from the Romanian check point party on OHA beach bar in mamaia to go visit Bulgaria, a country not previously on our list, but as we'd heard there was a beautiful beach about an hour and a half away from where we were, with the added bonus of adding another country to our list. We figured we couldn't refuse! 

However fate had other plans for us, as one of the cars in our convoy had a bit of a disaster. Their clutch cable broke, essentially putting an end to their days driving. Luckily though, a local knew a mechanic who lives above his garage and after seeing us standing outside, decided we were worth giving up his Sunday afternoon for, and so set to work temporarily repairing the cable so the cads could be mobile again.

One rather sad consequence of the clutch delay was losing some members of the convoy. First with shitting thunder driving off to find a topless beach in Bulgaria without noticing they'd lost the rest of us, and second having to say goodbye to the village idiots. They are going the southern route and have to make their Iranian visa dates so were forced to push ahead. Saying bye to them was especially hard, not knowing when we'd see them again on the road. Whether they would make the tough road ahead of them.

 

To cheer us up, the local mechanics son sent us off to another local beach where he said there was some fun to be had. He works the trampolines down there and said we could have a go later. So off we headed to the town of eforie for a bit of an adventure.

 

We could not have been less prepared for what we found. A beach town with a deserted fun fair on the corner (we later discovered it opens only at night), and the happiest, friendliest people we have ever met! They literally could not do enough to help us. We had street vendors coming over and giving us their merchandise, telling us what we were doing is such an amazing and positive thing to do these days. Image that, these goods are their livelihoods and they were giving them to us.

After that we headed up to a local restaurant they had suggested to us, to try a spot of local cuisine, again the staff couldn't help us enough!! They laughed and hated with us about all the dishes and what were their favourites. But then it got even better, the manager of the restaurant came over to chat with us, and after finding out we had nowhere to stay, offered to put us up for the night in her staff quarters! For a small donation of course.

We had promised our new vendor friends (Elvis, Elvis and Bogdan) that we'd go meet them on the beach, and so down we headed. We sat on the beach with these lads until the wee hours of the morning laughing, chatting, drinking and realising that some things transcend culture. To end the night we lit lanterns together and watched them float off into the sky above the Black Sea...

 

And so now here we are in our staff quarters hoping that tomorrow will bring a fixed clutch, the open road, and a few more countries on the list...