[FUDROP6]JAMES and Carolyne Rylance promised their youngest daughter they would host a big and belated party for her 16th birthday with low-fat food a feature.
The venue was to be their sprawling family home on the leafy outskirts of Timboon where she had grown up - riding her bike, jumping on the trampoline and catching the school bus at the front gate with the big, green mailbox.
The bus still passes the gate but it doesn't stop any more.
The kids on board miss the girl with the wide smile who used to hop on each morning for the trip to Cobden.
While the rest of Australia was celebrating the Melbourne Cup, Carolyne and James Rylance and their four older children, Matthew 24, Andrew 22, Kathryn 20 and Daniel, 18, were saying a heart-breaking farewell.
It was to the little girl with the piercing blue eyes and long blonde hair lying in the intensive care bed before them. They all wished they could turn back time.
Emily Rylance died in the Royal Children's Hospital on Tuesday, November 4. She had spent 91 days battling a rare digestive disorder known as intestinal lymphangiectasia.
James said they always promised Emily she would eventually make it home. "What else do you do? It's your child. You have to be positive."
Emily Jane Rylance was a little fighter for much of her short life. She first sent medical staff into a panic when she was born in the early hours of August 1, 1992, at the Timboon hospital.
In respiratory distress and with kidney problems, she was found to have two holes in her heart. "We were told afterwards she nearly didn't make it," Carolyne said.
At four years of age, Emily became the 15th child in Australia to undergo an innovative procedure where surgeons inserted a small device to close the holes in her heart. It worked beautifully - only requiring yearly check-ups.
Every weekend Emily would tag along with her family for netball and to watch her brothers play football and cricket. However, the typical, easy-going lifestyle was interrupted two years ago when Emily caught a bout of diarrhoea. "There was a bug going around, but it went on too long."
She was referred to the Royal Children's Hospital (RCH) where blood samples and testing showed Emily was suffering from intestinal lymphangiectasia, a critical condition where the lymph vessels supplying the lining of the small intestine become enlarged and obstructed, resulting in a loss of proteins.
James said the condition, which was not related to her previous medical problems, basically meant all the good nutrients in Emily's body were being drained out with the waste.
Carolyne said Emily was placed on a restrictive diet, limiting her intake of fat to 10 grams each day. "We spent hours and hours in the supermarket trying to find stuff, reading and re-reading labels to see how much fat was in things."
Emily's weight dropped to 34 kilograms after she lost four kilograms in a fortnight last October. Feeding tubes were inserted through her nose and later, directly through the muscles of her abdomen, so she could be fed at home overnight.
She managed to complete work experience at the Divas and Dudes hairdressing salon in Timboon, but became increasingly lethargic and found even minor tasks difficult.
James said the condition gradually wore his daughter down. By mid-winter, their daughter was in respiratory distress with a build-up of fluid around her heart and lungs. She spent her 16th birthday visiting doctors and having X-rays in Melbourne and within four days was admitted to the RCH.
"The whole way through, Emily did everything the doctors asked, even though sometimes it was very painful. She had blood test after blood test and X-ray after X-ray. They were running out of options and ideas."
Meanwhile, people back home were rallying behind the family, organising events and setting up an account for donations. The school, football/netball club, Port Campbell recreation reserve committee, cricket club and Divas and Dudes were among those who helped with the appeal. The Rylances this week thanked everyone for their support.
By Saturday, November 1, Emily had suffered two infections. Carolyne said she was unable to eat and was leaking fluid from around the drainage tubes that had been inserted into her lungs.
"Saturday was the last time she was able to speak to us.
"At that stage, she was up against it," said James. "When you've been down there 13 weeks, you start to pick up little things. Your gut reaction was telling you it was going to be a miracle for her to turn around now."
Renal ultrasound results the following Tuesday showed a lack of blood supply to Emily's kidneys. "Her body was starting to shut down."
Royal Children's Hospital chaplain Tom Rose approached the family and offered to organise a small service at Emily's bedside. It was held before the Melbourne Cup was run because Emily always asked to take a day off school to watch the race.
At 5.30pm they told doctors they were ready to turn Emily's respirator off. "It was all over within 10 minutes and it was very peaceful. She'd just been through too much."
Bright blue skies greeted the 600-plus mourners to Timboon's Catholic Church for Emily's funeral service on Remembrance Day, led by Father Eugene McKinnon and with Tom Rose reading the eulogy.
He urged those who knew the bubbly teenager to think of their grief as a rainbow. The darker colours at the base represented their sorrow, while the brighter, outer colours reflected their wonderful memories of their daughter, sister and friend.
This theme was repeated at the Port Campbell cemetery where 150 white balloons were released, with the Rylances each releasing a rainbow balloon. They watched silently as the colourful balloons drifted together towards Timboon and then turned in the gentle breeze back to the ocean, as if Emily's spirit was finally free.
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