Terminally ill Tadcaster girl to have fun packed remaining days

Sonny Lang was just four-years-old when she underwent a heart and lung transplant after being diagnosed with the genetic condition Cystic Fibrosis as a baby.

Despite constantly defying medics’ predictions she would only live until 14, Sonny was given the devastating news last year that her prognosis is terminal after her condition deteriorated.

While it is not known exactly how much time she has, Sonny’s friends and family are determined to fill this time with incredible memories by raising money to fulfil a ‘bucket list’.

As Sonny Lang sends messages to her friends in her Tadcaster with a smile on her face, anybody could be forgiven for thinking this was just a normal day in the life of a 22-year-old girl.

But despite her beaming smile and carefree personality, Sonny is battling the latest cruel development in a life wrought by illness and uncertainty.

When she was just 13 months old, Sonny was given the devastating news that she suffers from Cystic Fibrosis, a genetic disease affecting the lungs and digestive system, for which there is no cure.

With such a late diagnosis, her illness was considered to be ‘beyond redemption’ and her prognosis was terminal.

But on her fourth birthday and not for the last time in her life, Sonny defied the odds to become the youngest person with CF to successfully undergo a heart and lung transplant.

During the 18 years since that day, Sonny has battled with heart attacks, crippling arthritis and constant medication, while attending school and college and keeping active through gymnastics and swimming.

But after she contracted pneumonia on holiday in Crete last year, Sonny and her family were dealt a devastating blow in their fight against the condition.

Doctors at Wythenshawe Hospital, Manchester, discovered her lungs had collapsed, but this time her organs would be too weak to survive another transplant.

Despite the crushing diagnosis, Sonny and her mother Anna, 49, refuse to be downbeat about the situation as they sit at the breakfast table sharing another laugh.

“You don’t have a choice about staying positive, you either sink or you swim,” Anna explained.

“We could be sat here wailing and howling or you can just try and live every day.

“If tears brought a cure then I would sit here crying every day but they don’t. So you have to grasp every day and deal with it accordingly.

“What are you supposed to do when you find out that at 13 months your daughter has this terrible illness? You’re not going to send her back so you deal with it and make the best of it.”

Anna explained that from the moment her daughter was born, she could sense there was something wrong with her health.

Despite taking her daughter to hospital at just two-weeks-old, it was not until a lifeless Sonny was taken to York Hospital that she was finally diagnosed with Cystic Fibrosis.

Sonny’s prognosis was bleak but her mother refused to give up hope. Anna contacted Dr Jim Littlewood at St James’s University Hospital in Leeds, where Sonny was cared for for six-and-a-half months.

On her fourth birthday, and with just an expected six months left to live, Sonny was finally added to the transfer list.

At the eleventh hour, Anna got the all-important call and took her daughter to Great Ormond Street Hospital for the historic procedure.

Anna said: “At first we were told that she could not have a heart and lung transplant because she was too young. It was a hideous, monstrous and traumatic time because we were just keeping her alive, not knowing when this dreaded day would arrive.

“But, six months after she was put on the list, we were told she would be taken off it in the coming days and be put into St Martin’s Hospice because she would not sustain the operation.

“The next day the bleep went off. It was still torture as there was only a 50-50 chance she would survive the operation so you’re left thinking ‘is this the last time we’re going to see her?’”

Thankfully, Sonny survived the procedure and six months later she was returned home, waiting to start school with her friends the following January.

Since that point, Sonny has endeavoured to live a normal, healthy lifestyle. In order to keep her organs fit, she stays active by going swimming, doing gymnastics and visiting the gym.

Her positive attitude was recognised from a young age, when she was awarded the Child of Courage Award and won a trip to Euro Disney with her family.

But with as doctors predicted that she would only live until she was around 14, Sonny was always fighting against the clock.

Her condition deteriorated last year after contracting pneumonia in Crete last and Sonny was flown back to Manchester and escorted from the plane by ambulance.

It was then she received the devastating news there would be no transplant this time around and her prognosis became terminal.

Still, Sonny refused to be labelled the victim and reacted to the news in her usual brave spirit, which, she explained, is the only way she knows how.

She said: “I’m not proud at the way I handle the news or my illness. I just think of it as normal behaviour and that’s how I wanted it to be.

“I don’t know what it’s like to be normal because this is normal for me. I’m not proud because it’s just normal.

“Maybe it would be different if I had been healthy at some point in my life but this is how it’s always been. People have said it’s nice I was positive and I know it would be easy to get down but it’s a pointless emotion.”

Despite Sonny’s positive approach, Anna admitted that, at first, the news and despair hit her ‘like a bullet,’ but she retains hope that her brave daughter can defy the odds once again.

She said: “I’m not giving false hope but I’ve been in these shoes before. My hope is to keep her as healthy as possible and you never know what’s going to be around the corner.

“She’s just been in hospital for last couple of weeks and they were struggling to deal with her but she just seems to rally round when people say she won’t, it’s almost as if she’s got a guardian angel.

“That might sound ludicrous but she’s been counted out so many times but she’s always bounced back.”

As Sonny broke into another infectious smile, she explained that her friends are now trying to raise money to fulfill a ‘bucket list’ so she can ‘fit in as many fun things as possible’.

Sonny has already made inroads on her ‘to-do’ list. First Direct Arena have already offered her and 12 friends tickets to watch the wrestling in November, and former Manchester United and Tadcaster Albion midfielder Jonathan Greening has offered to pay for her driving lessons.

Sonny, who laughs as she explains that her favourite past-time is eating, has also received a voucher for a free meal for two at her favourite Italian restaurant, La Bella Vita, in Garforth.

More than £7,000 has already been pledged on Sonny’s Go Fund Me page and the 22-year-old reflected that she ‘never realised’ she was so liked.

She said: “I really wanted to go to Florida and I’ve always wanted to go back to Disneyland but, really, I don’t want a lot of things.

“I don’t want to be asking people for a lot of stuff but the reaction has been amazing. Everybody has been writing such nice things on my page and I can’t believe it’s gone so mad.

“It’s so heart-warming and you never know that these people are thinking of you.”

Tadcaster Albion, where both Sonny and her mother worked for seven years, will also be holding a charity football game on October 23 to raise money for her fund.

A Sonny XI will take on YOLO United, made up of reality stars from Big Brother, X Factor, Love Island and The Voice. Director James Gore said that it was ‘only fitting’ the club got involved in the fundraising efforts.

He said: “Sonny has worked at Tadcaster Albion for the last seven years and is a much-loved and respected member of the Tadcaster Albion family.

“During this time, we’ve seen first-hand the many challenges that Sonny faces on a daily basis. Despite her on-going health problems, she remains positive and bubbly, and always has a smile on her face.”

Sonny and her Mum say they will now be enjoying their remaining time together, just as they have done as best friends for the past 22 years.

Anna said: “You feed off each other, she doesn’t want to be labelled the victim and I don’t want to see her being labelled the victim so you just feed off each other.

“She has times when she can’t walk but she will say she really wanted to do something and I say well we’ll do it because if not it’s another wasted day.

“We don’t do anything without consulting the other one, we’re just best friends. I’ve based my whole life around her, she’s my number one priority.”