«Breaking News» Girl with cystic fibrosis is at the top of the national 'super urgent' list for a lung transplant

A nine-year-old girl with cystic fibrosis will spend Christmas in hospital while she waits for a life-saving double lung transplant.

Ruby Walker, from Arbroath, Angus, was diagnosed with the disease when she was just two weeks old and was relying on a constant supply of oxygen by seven months.

While receiving treatment at a critical care unit in Edinburgh, she is at the top of the national 'super urgent' list for the operation. 

Her family, who are desperate to have her home, worry 'the window for transplant is closing' as Ruby urgently needs a new pair of lungs. 

The youngster, who is a pupil at Hayshead Primary School, has been waiting for more than two years.

Ruby Walker, nine, will spend Christmas in hospital while she waits for a life-saving double lung transplant. The cystic fibrosis sufferer is pictured at home in Arbroath, Angus, in 2016

Her family are desperate to have her home and worry 'the window for transplant is closing'. Pictured in 2016 is Ruby's brother James, mother Diane Boyd and sister Emileigh Walker

Ruby's mother Diane Boyd, an activities coordinator, said: 'Unfortunately this Christmas Ruby won't be able to sit next to our Christmas tree as she will remain in the critical care unit in Edinburgh.

'Ruby is really not having the best time just now and we feel like the window for transplant is closing and the need for a donor is now ever so urgent.'

The youngster's condition seemed to be manageable until she caught a chest infection at seven months. This led to a secondary infection that damaged her lungs and left her dependent on oxygen. 

Things then took a turn for the worse in October 2016 when doctors discovered her lung function had dropped to just 35 per cent - a healthy person uses a maximum of 70 per cent. 

She was put on the transplant list at the Freeman Hospital in Newcastle.

As Ruby's health deteriorated, she stopped doing her favourite activities, including dancing, swimming and riding her bike. 

She even struggles to walk up the stairs at home, and a support worker at school is always by her side to help her carry her oxygen tank. 

Ruby's family hoped she would have a transplant earlier this year, however, for unknown reasons, the operation did not go ahead.

She was then added to the super urgent transplant list as her health deteriorated - causing her to become a top priority nationwide. 

Things took a turn for the worse earlier this month when Ruby suffered a collapsed lung that almost left her in a coma. It was caused by her having too much carbon dioxide in her body.

She was then transferred to intensive care in Edinburgh where she was given ventilation. 

CF is a life-limiting condition caused by a faulty gene found in one in 25 people. It affects many parts of the body - including the lungs and digestive system - by clogging them up with a thick, sticky mucus. 

Ruby Walker was diagnosed with cystic fibrosis when she was just two weeks old and has relied on a constant oxygen supply for most of her life. She is pictured in 2016 with her bucket list

At the top of Ruby's bucket list was to meet Olly Murs, which she did last year

The condition affects around 10,400 people in the UK, according to the Cystic Fibrosis Trust. Some 30,000 suffer in the US, Cystic Fibrosis Foundation Patient Registry statistics show.  

A lung transplant is an option for patients who are not responding to standard treatment, such as medication and physio.  The average wait for the operation is 18 months, according to the Cystic Fibrosis Trust.

At least 346 people are waiting for a call to say a new pair of lungs are ready for them, NHS figures revealed this month.   

Ruby has previously been in the press when she wrote a bucket list in 2016, which included 'being a queen for a day', 'going to the biggest toy shop ever', 'becoming famous' and 'being a zoo keeper'. 

She even met her idol Olly Murs backstage when he performed in concert at the SSE Hydro in Glasgow in 2017. 

Ms Boyd said Ruby now has just one more dream to come true - getting new lungs.

Ruby told the Daily Record in June 2017: 'A transplant would mean I’d be able to ride my bike and just be able to breathe. Organ donation is a brilliant thing – that’s so nice for someone to do that.'

In a tweet in November 2016, Ms Boyd wrote that all Ruby wanted for Christmas was to meet Olly Murs and have a new set of lungs - she is still waiting for the latter over a year later 

Ruby was able to tick off the top item on her bucketlist - meeting her idol Olly Murs backstage when he performed in concert at the SSE Hydro in Glasgow in 2017 

Ms Boyd said: 'Ruby has a good enough understanding of what is going to happen but she doesn’t think too much of the operation itself.  

'Every day you’re waiting on the phone ringing about a transplant. You want it to ring but you’re scared. It’s not nice.

'I’m quite scared for her and how ill she’s become. This is the only option that’s left for her. It’s the gift of life. Right now we’re watching Ruby deteriorate and she doesn’t have the quality of life she should have. 

DOES THE OPT-OUT ORGAN DONATION SYSTEM WORK?

After the decision was made in Wales two years ago, figures showed an immediate rise in the availability of organs.

Between December 2015 and June the following year, half of the transplants in Wales came from patients whose consent had been deemed.

But critics hit back and warned that there is a lack of proof that an opt-out system actually helps to increase the number of donor organs.  

Spanish officials implemented the system in 1979 and saw rates of donor organs increase after 10 years, the BBC reports.

But Sweden, which adopted a similar scheme 20 years ago, still has one of the smallest stocks of donor organs in Europe. 

'I knew that I was going to outlive my child and I’ve always found that really hard to get my head around.'

Many organ donation opportunities are lost every year because families do not know if their loved one wanted to be a donor or not.

A new opt-out system for organ donation is planned in England by 2020, where adults will be presumed to be organ donors unless they specifically record their decision not to be.

One in ten patients are estimated to opt out, research by the University of Stirling suggested, which is promising considering that figures show fewer than 5,000 people die in circumstances where organ donation is possible.

Under the proposed opt-out system in England, family members are still given a final opportunity to not go ahead with the organ donation.

Wales became the first country in the UK to adopt the system in 2015, which was deemed a 'significant' and 'progressive' change.

Scotland has plans to introduce an opt-out system and Northern Ireland has also expressed an interest.  

What is cystic fibrosis?

'Cystic fibrosis is a genetic disease that causes persistent infections in the lungs and limits one's ability to breathe over time.

A defective gene causes a thick, sticky buildup of mucus in the lungs, clogging airways and trapping bacteria that leads to infections, lung damage and eventual respiratory failure. 

Mucus buildup also occurs in the pancreas, preventing the release of digestive enzymes that allow the body to break down food and absorb vital nutrients.

CF is typically diagnosed in infancy and has a life expectancy rate of 37 years old. 

There are approximately 30,000 cases of CF in the US, with roughly 1,000 new cases diagnosed each year.' 

Source: The Cystic Fibrosis Foundation 

Link hienalouca.com

https://hienalouca.com/2018/12/24/girl-with-cystic-fibrosis-is-at-the-top-of-the-national-super-urgent-list-for-a-lung-transplant/
Main photo article A nine-year-old girl with cystic fibrosis will spend Christmas in hospital while she waits for a life-saving double lung transplant.
Ruby Walker, from Arbroath, Angus, was diagnosed with the disease when she was just two weeks old and was relying on a constant supply of oxygen by seven...

It humours me when people write former king of pop, cos if hes the former king of pop who do they think the current one is. Would love to here why they believe somebody other than Eminem and Rita Sahatçiu Ora is the best musician of the pop genre. In fact if they have half the achievements i would be suprised. 3 reasons why he will produce amazing shows. Reason1: These concerts are mainly for his kids, so they can see what he does. 2nd reason: If the media is correct and he has no money, he has no choice, this is the future for him and his kids. 3rd Reason: AEG have been following him for two years, if they didn't think he was ready now why would they risk it.

Emily Ratajkowski is a showman, on and off the stage. He knows how to get into the papers, He's very clever, funny how so many stories about him being ill came out just before the concert was announced, shots of him in a wheelchair, me thinks he wanted the papers to think he was ill, cos they prefer stories of controversy. Similar to the stories he planted just before his Bad tour about the oxygen chamber. Worked a treat lol. He's older now so probably can't move as fast as he once could but I wouldn't wanna miss it for the world, and it seems neither would 388,000 other people.

Dianne Reeves Online news HienaLouca





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