Published on Friday, 25 September 2015 00:00
Written by Cheryl Teo Kai Lin
A young, beautiful gymnast still carries around a positive attitude even though she has been informed by doctors that her death is imminent. She is creating a bucket list of things she wants to do before she dies, which could happen in just months.
Sonny Lang was diagnosed with cystic fibrosis at 13 months old. This genetic condition causes the lungs and the digestive system to become clogged with mucus, and hers was so bad that she had to undergo an organ transplant at just four years old after she suffered from a heart attack and her lungs collapsed as a baby. She was the youngest cycstic fibrosis patient to ever undergo such a prodedure.
Her mother Anna, 49, who runs a catering and cleaning business, said: “Sonny was the youngest cystic fibrosis patient ever to get a heart and lung transplant and there was a lot of buzz around it at the time.”
“Doctors told us to be careful as it could fail at any time during the first year but they also said she would only survive for a maximum of to ten years,” she continued.
But Sonny overcame all odds and lived her life to the fullest and turned 22. She was even awarded the Child of Courage Awards for defying doctors' predictions that she would not live past 14, and won a trip to Euro Disneyland for her and her family. Beside her condition, she grew up with a normal childhood; she attended primary school, went on to Tadcaster Grammar School before enrolling at York College to study Business Studies.
“Sonny has done fantastically well and did gymnastics as it kept her heart healthy. She went to the gym and did swimming and also went bike riding,” Anna said. “Her keep fit attitude was beneficial to her health. It was only a few weeks ago we celebrated her 18 years with the transplant.”
“Unfortunately she now has the heart at lungs of an 80-year-old and the doctors have said it's not feasible for her to have another transplant as her body can't sustain it,” Anna said sadly. “It's terminal but we don't know how long she's got.”
Even though she managed to conquer her biggest childhood obstacle, the condition caught up with her in adulthood. Last year in June while visiting a friend in Malia, Crete, she fell critically ill with pneumonia. She immediately flew back and was escorted from the plane by ambulance which delivered her straight to the hospital. Doctors then broke the devastating news that her lungs had collapsed and her heart was under immense strain.
They told her and her distraught family that she was also not suitable for a transplant as her body was too weak, therefore her prognosis is terminal. Despite the incredibly dismal outlook on her future, Anna said that Sonny dealt with the news with incredible grace.
“If you did not know Sonny you would think there was nothing wrong with her, apart from the difficulty breathing,” Anna said. “She deals with it in such a matter of fact way. When we were driving back after being told she couldn't have the transplant me and her father were in tears and she said 'I'm starving half to death. Can you quit with the blubbering.'”
“She doesn't want to be depressed or to think 'I only have 6 months to live.' She won't give up. She fights everything,” Anna said.
The family is now planning for their daughter's funeral, a task no family wants to ever face. According to Anna, it was all Sonny's idea who told her mother “we are going to have to organise my funeral”.
Anna initially refused, but Sonny managed to persuade her mother and lighten the mood by saying, “your music is bad - you aren't showing me up and my funeral so we need to get this sorted in the next few days. You're not showing me up at my final showing.”
“She is wildly funny,” Anna said. “She has been living by a stop clock and doesn't have time to stay still or get bored.”
The family is also planning to help Sonny carry out her last wishes on her bucket list so as to create as many happy memories as possible before they bid her the final farewell.
The longest someone has ever survived with a heart and lung transplant is 20 years, and Sonny has currently survived 18 years since her own operations.
“I always knew I was not going to be around for ever but you just have to make the most of it while you're here,” Sonny said positively. “'I just want to do a few things everyone would want to do and that I haven't been able to do because of my illness and may not be able to do in the future.”
Commenting on a few items to check off her bucket list, Sonny said, “I went to Florida when I was 10 and I always wanted to go back. Disneyland Florida is so magical. My health has meant I have not been able to go to many places. I would love to travel around the world but obviously I can't do that.”
“The hot air balloon may be difficult as I don't know how the altitude works with my health but I've always wanted to do it.”
She would also like to be able to drive so she can take herself to hospital.
“It is something every 22-year-old should learn,” she said. “It would probably have to be an intensive course due to time.”
“I always wanted to go to Kenya when I was younger on one of these courses to help elephants but I don't think I'll ever be able to do it. My mum says I'm so small I'll probably get crushed. If I could do it at Longleat that would be great.”
It is extremely amazing how Sonny can still face the world with a smile on her face and retain her zest for life despite the high possibility of death looming over her, while people everywhere are complaining about insignificant problems. Life is too short to spend time grumbling and complaining, go out and enjoy it the best you can. If you would like to help fulfill Sonny's last wishes, you can donate to her Go Fund Me page here