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"i Love My Life"

Saw this in a newspaper, really like the attitude:

http://www.dailymail.co.uk/health/article-1368763/Fibrodysplasia-Ossificans-Progressiva--Woman-rushes-aisle-rare-disease-turns-statue.html

A young woman asked her boyfriend to marry her so she could fulfil her dream of walking down the aisle before a rare condition turns her into a statue.

Rachel Winnard 26, suffers from a rare and debilitating condition called Fibrodysplasia Ossificans Progressiva which means her muscles, tendons and ligaments are slowly turning to bone.

The condition is slowly solidifying her whole body and she is already unable to raise her arms above her head and must wear high heeled shoes at all times as she cannot straighten her feet.

 

Standing tall on her wedding day: Rachel's body is slowly solidifying. she can no longer raise her arms above her head but was determined to walk down the aisle to her husband Paul (pictured)

 

There are thought to be fewer than 500 people in the world with FOP, for which there is no cure.

Many sufferers are often faced with the agonising decision whether to stand up or sit down for the rest of their lives as the disease progresses.  

However, Rachel is determined to make the most of her life while she still can and on February 29th, 2008, asked her boyfriend Paul, 30, to marry her.

 

She said: 'It's always been my dream to get married and have a family and I desperately wanted to walk up the aisle.

 



THE CONDITION THAT TURNS THE SUFFERER INTO A STATUE

Fibrodysplasia ossificans progressiva is a rare genetic disorder where muscle and other tissues such as ligaments are gradually replaced by bone.

This limits movement of the body over time, usually starting with the neck and progressing down the body.

An accident or virus such as the flu can cause flare-ups of the disease.

Symptoms don't usually develop until a child is a few years old, but sufferers may be born with malformed big toes.

There are only around 450 confirmed cases worldwide.

There is no cure for the condition and most people with it die by the age of 40.



'Ending up in a wheelchair is my worst nightmare so it was something I wanted to do while I was still able to do it.

'When Paul and I had been together six months I decided he was the one I wanted to be with for the rest of my life and I asked him to marry me on February 29.

'We were in a restaurant and I just said, 'I'm sorry I can't get down on one knee'. I was so nervous, but I was overjoyed when he said yes.'

The couple recently married near their home in Rochdale, Greater Manchester, when Rachel was able to walk up the aisle.  

But now the couple plan to defy Rachel's doctors by trying for a baby, even though pregnancy can pose extra risks to those with FOP.  

Doctors have warned Rachel against falling pregnant as it could accelerate her condition and there is a 50/50 chance her child could have FOP too. 

The couple suffered a miscarriage early last year, but remain hopeful they will soon be able to complete their family with a child.  

Rachel said: 'The doctors have told me not to get pregnant, but I've never let anyone tell me what I can and cannot do.

'There's a chance my child will have FOP, but I love my life and I don't see why that should change anything.

'Obviously, it gets me down some days when I can't do all the things I want to do - like just being able to wash my own hair, that drives me mad - but I just keep going.'

 

Still mobile: The 26-year-old is now married. Her husband Paul is her full-time carer and they are hoping to have a baby against doctors' advice

The slightest injury can cause a flare-up as Rachel's bodily repair mechanism causes bone to grow where muscles and other tissues should be. 

The condition is so rare that Rachel was 12 by the time she was finally diagnosed.

She first showed symptoms of the condition at the age of just 18 months when a tumour-like lump appeared on her back.

Chemotherapy caused the lump to disappear and Rachel grew into an active child who enjoyed horse riding, dancing and rollerblading.

But then, at the age of nine, an accident on the garden swing caused another lump to appear on her back and Rachel endured more chemotherapy and radiotherapy.

It was only years later, when more lumps developed on her chest, that a specialist noticed she was missing a bone in her toe - a classic sign of FOP. 

At the age of 16, Rachel attended a conference for people with FOP in Philadelphia, in the US, and saw for the first time the devastating effects of the disease.  

Nevertheless, she refused to let it hold her back and when she met binman Paul via mutual friends, she said she knew she had found the one.

Paul is now her full-time carer and does all the housework and cleaning, even dressing his wife every morning and helping her with all the tasks she cannot do herself. 

Rachel said: 'I guess you could say I have him well-trained.

'The first time I stayed at his house, he helped me with my boots in the morning.   He soon became aware that I couldn't bend down to pick things up or walk for long, but my disease only brought us closer. 

'Now I'm looking forward to having a belated honeymoon in Australia and trying again for a baby. 

'I'm really positive about my future with Paul. It's the way I've always been and most of the time I try to forget I've even got FOP. I just try to live my life as normally as possible.'

plungesponge plungesponge 26-30, M 7 Responses Mar 23, 2011

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Must be very rare?

Wow. This is another one of those God moments. When I am self loathing, "Me - Oh -My, Whoas - Me," types scenarios while I am feeling pitiful, I come across. Then reality slaps me in the face saying, "Quit your bitchen punk! "

Thanks for sharing...

I needed that!

Very inspiring!

That was a sad story. i read about it today in the paper. I am glad she got her wish to be married

Horrible disease for anyone to go through but I can't help wonder about their decision to have a child with 50% chance of having the same disease.

I did - but only because it was on Greys Anatomy once.. I half thought that it was made up.. So sad, but what a brave woman, and a wonderful man to stand by her. They must really be in love, bless them. I wish them nothing but happiness.. x

Holy sheep! I had no idea that such a condition existed! Truly heartbreaking, as FeasibilityStudy said. <br />
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This indeed is a heartwarming story, that she can find true happiness in the face of such a future. Thanks for sharing!