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Tuesday, 9 February 2010

Chessington girl needs new lungs

Breathing easy is something we all take for granted. But for one woman from Chessington, it’s a constant struggle.

22 year old Portia Jones suffers from Cystic Fibrosis and is on the transplant list for a new pair of lungs.

Her husband Dale has pledged to run the London Marathon for the CF Trust and the CF ward at the Royal Brompton Hospital.

To donate please log onto

A fundraiser is being held at the Holiday Inn in Chessington on Saturday March 6th.

A letter from Portia.

" On the outside people with Cystic Fibrosis can look healthy but on the inside its a very different story."

" My name is Portia Jones, I am 22 years old and everyday is a struggle for me. I suffer from the UK's most common life -threatening inherited disease Cystic Fibrosis.

CF effects over 8,000 people in the UK.

Cystic Fibrosis is caused by a single faulty gene that controls the movement of salt through the body. Although people with Cystic Fibrosis may look healthy on the outside it is internally that the damage is happening.

For a person to be born with Cystic Fibrosis both parents must be carriers of the faulty CF gene. 1 person in 25 carries the faulty gene, often without knowing it. This means there are well over 2 million carriers within the UK.

In CF, the internal organs, especially the lungs and the digestive system , become clogged with thick, sticky mucus, resulting in infections and inflammation making it hard to breathe and digest food.

There is currently no cure for CF, and everyday I have I am grateful for.

When I was younger CF did not play as huge a part in my life as it does now. I was just like any other child playing, running and always up to mischief. All that was different was that I had to take pills after I ate and do Physio every night.

Growing up with CF wasn't always easy, as i got older my health began to deterioate and i had more admissions to what was to become my second home. The hospital.

Now at the age of 22 I fight the biggest battle with CF everyday. Until a year ago I was completely mobile and independent, although my independence isn't like anyone else's. My definition of independence means not needing Oxygen all day, everyday and relying on my husband and family to help me to do day to day things that people often take for granted.

In the winter of 2008 I became very poorly, I was extremely underweight and kept having several collapsed lungs. My health was at the lowest it had ever been and was about to face my toughest battle yet, to survive the night.

It was a cold night in December and the doctor that was caring for me in the Royal Brompton Hospital asked to see my Husband Dale and my parents in a private room. In this room a conversation to take place that would later decide my fate.

The doctor sat down and proceeded to tell my husband and parents how my health had deterioted rapidly and how I was now in his words in serious trouble. The doctor continued to explain to them how he felt it was best that i be moved from Foulis ward and into intensive care as he didn't have much hope that i would be able to survive the night on my own without being on a ventilator.

My husband and parents responded and said to the doctor that they felt it was my choice and only i could make this choice.

When my family returned I knew it was bad news. The doctor then told me that my chances of surviving through the night were very slim and that in his professional opinion i should be moved to intensive care and put on a ventilator and that I couldn't have my family with me at all times.

My reaction shocked the doctor. I knew i couldn't fight this battle on my own and that i needed my family with me at all times to help me to grow stronger. So I requested not to be moved and took my chances.

My doctors often cool me a tough cookie and sometimes a medical miracle as i made it through that night and since that night have grown stronger and stronger.

Over the past year although my health has deteriorated have also achieved many goals too.

In April 2009 i was placed on the transplant list and am currently awaiting a lung transplant that will hopefully transform my life and give me back some of that independence that i have lost.

Thank you for allowing me the opportunity to express how someone deals with CF and how this life-threatening disease isn't something your grow to live with, it grows with you.

I hope by hosting our charity evening that it not only raises awareness about CF but that it also makes people stop and realise just how precious life is, it is not until the simple things that people take for granted are taken from you that you realise just how precious life is. "

Thank you for your time

Portia Jones xx
posted by Radio Jackie News Team @ 2:08 pm  

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