Sarah died at 2.45pm on Tuesday. We met with our Minister at 10.00am Wednesday to discuss the details for the funeral scheduled for Thursday at 4.00pm, the day before the four day Easter long weekend. I suggested that Jean could prepare some notesto assist him.
The following is what flowed from Jean's heart in the space of about 90 minutes sitting in front of the computer.

Sarah was born on the 19 June 1985. We were thrilled because we had our much wanted daughter.

The first year was not easy, as Sarah had problems with feeding and growing. I felt there was something wrong, but 28 visits to doctors, 2 to the emergency department at PMH and 5 to 2 paediatricians got us nowhere. What got us through that first year was Sarah's specialness. She reached all her milestones early, and was such a happy, delightful child - even then, she won hearts where ever she went.

Sarah was diagnosed as having Cystic Fibrosis on the day after her first birthday, and by then she had some lung problems. However, she responded well to treatment, and the next 7 years saw her happy, healthy and active. Minor signs began to appear in those years, but gave us no cause to worry. We were so grateful we had a "good" case.

In 1993 she had 3 visits to the hospital, each of about 2 weeks duration. The first cracks began to appear in our peaceful world with the discovery of an antibiotic resistant bug called Cepacia. She was the fifth person in WA to get this bug, and it was implicated in a number of quick deaths overseas. She also was found to have a severe allergy to a fungus which existed in her lungs - a fungus called aspergillous. At this point, it was difficult for us to realize that you only get such bugs and funguses if the lungs are in poor shape.

1994 was a good year. She was flowergirl at her cousin Jane's wedding. We are forever grateful to Kevin and Jane for this opportunity. Sarah loved it. For the rest of the year she was pretty good, with a lung function higher than the average child's. We were put at ease as we felt she was handling her allergy and Cepacia ok.

1995 was when our world started to fall apart. Three weeks hospital in February/March saw a small improvement in her condition, but overall her lung function began its downward slide. One week she played a great game of basketball and had a lung function of about 130%. The next game she played, she was in difficulties.

After her first visit to hospital in 95, we all went to Malaysia. It was wonderful and Sarah ate like a horse! She weighed in at 39kg at the end. We had a lovely time, but towards the end of the two weeks Sarah's health seemed to be a little worse. She was back in hospital a couple of weeks after we got back. This time after 5 weeks her health was no better and her lung function was heading toward the 70%'s. She had a couple of days home, then went back terribly sick with severe liver problems which we were afraid may have been progressive liver disease. We were delighted to get the results of tests which showed her to have Hepatitis A. She was very ill, but bounced back in a remarkably short time. I kept telling her she was tired and needed a sleep, but she wouldn't be in it. She had too much living to do.

A little later she went in for another 2 weeks, and this time her lung function was hovering around the 50%'s. We still hoped for a reversal.

On 17 November she went in for the final time in 95. Her lung function dropped to 33% and she needed constant oxygen. She tried to be mobile, and we went for little walks every day. We were relieved when we found out she had insulin-dependant diabetes. Maybe this accounted for her reluctance in moving around. She picked up quickly, and was able to come off oxygen. With the help of Dornase (a genetically engineered drug) her lung function reached 50%. She quickly learned to give herself needles, and watch her diet and do all the other things she had to do for her cystic fibrosis. She never complained.

We had a wonderful Christmas. She was happy and felt well. We went for long walks everyday to keep up her fitness, although she couldn't run or exercise too strenuously.

Just before school started, it was apparent she was in difficulties. Exercise of any sort became very hard for her, and her breathing was laboured even when she walked from one room to another. She felt like she was suffocating in small rooms and suffered from constant headaches, which we nowknow were probably caused by high carbon dioxide levels in her blood.

Her lung function was now 32% and she entered hospital after 2 days of school in the new year. By this time her usual healthy appetite was beginning to be severely depressed. She was devastated about going back to hospital, especially as one boy at school had asked her about her dying of CF. Her personality took a beating and she was quite depressed for a couple of weeks. Her lungs started to get worse. We stopped taking notice when her lung function hit 27%. She asked for them to turn the screen around so she couldn't see the results.

She had an infuse-port put in her chest to save her the trauma of repeated IV lines being put into her veins. At the same time while she was under general anaesthetic her doctors washed some gunk out of her lungs to find out what she was growing that was making her so sick. For two weeks after the operation she couldn't eat and received her food intravenously. Her appetite was almost non existent by now and she mostly ate to please me. At this stage she began to feel constantly sick and began to vomit a lot. Her mornings were very bad, and she sometimes complained of feeling really horrible, like she just wanted to die. In the afternoon, she came around and was the old Sarah, cheeky and loveable. She was a very talented artist and was given the job of making various cards for various members of the staff.

She was so brave and she had so much guts, that the staff of ward 9A nominated her for a special "Lions child of courage" award, which was to be presented on 28 April 1996 at Government House. I couldn't think of a more deserving little girl and she was so thrilled with the recognition - and the chance to be the centre of attention!

Twice a week I brought in girls from her primary school, Banksia Park. She loved these sessions and they gave her contact with the school we thought she'd be going back to soon. I am so grateful to all those parents who let their girls come in. Sarah was in the infectious ward, and it was lovelyfor her that parents would let their kids come in, despite this.

However as the days passed, Sarah was able to exercise less and her appetite completely left her. She also began to suffer from a raging fever, sometimes her temperature spiked at 40.3 degrees. She felt groggy, sick, lethargic and just grotty. She rarely complained. The bug she was growing was resistant to every known antibiotic, so her doctors just had to try some of the less common ones.

Last week I tried to get her to walk from her bed to her door, and it took her several hours to recover. We knew then that things were looking very grim for her. Liz Hofer, the cystic fibrosis coordinator, organized for her to get a "Make-a-Wish" - a little motorized three wheeler bike as she'd used one with her physio just the day before. Her face lit up in a smile which shone out through her oxygen mask when Liz gave her the news. She had some good times for the next few days. She suffered the mornings, waiting for the afternoons when she felt better. Then she used to get on her bike androar around the hospital. But by Thursday of last week, her afternoons were no longer good. Her nights were difficult, with raging fevers and difficulties in breathing. Her doctors tried new drugs, but nothing was working. By Sunday night it was becoming obvious she was fighting for breath. For 3 nights she could only sleep in snatches because breathing took all her time. Her dad and I had been keeping a 24 hour vigil with her all week, and we were both there on Monday morning at 4.30am when she told us she couldn't breath and she asked for morphine.

We knew that once she went on morphine it was just a matter of time. Morphine suppresses the brain's breathing mechanism so that although she couldn't breath, she felt like she could. It also suppressed her cough, which is essential in cystic fibrosis patients for clearing the lungs of excess gunk.

From Monday to when she died at 2.45 pm on Tuesday she slipped in and out of a dream state. When she woke up she was so happy. She felt great. She felt like she could breathe properly for the first time in months. We talked to her about dying and she made out her will. She was thrilled with all her visitors and she loved lots of attention. At 3.00 Tuesday morning she was awake for around 30 minutes. She joined us in one of her "Sarah songs" - You are my sunshine - for the nurses. We had cuddle and kiss sandwiches and she talked about the people she'd seen. That was the last time she was awake for more than a few minutes.

She died peacefully and without pain. She was surrounded by those who loved her and we talked and sang to her constantly. The feeling of love in that little room was incredible and we know she felt it.

We had previously talked to her about people who had near-death experiences, and I told her I'd look up at the ceiling when she died, and she would take all our love with her.

We are grateful to the staff at PMH. They were wonderful and caring to a person. They all gave her something special, whether it was flowers from Janet and Sarah, cuddles and kisses from Kate and Kara, smiles and patience from Joyce and Jenni. There are too many people to mention to express our gratitude to, but they know who they are.

We are grateful to Jane and Kevin for giving her a day she never forgot.

We are grateful to Banksia Park Primary school for their support, and for the all the parents who supported the call for visitors. And to Mrs Fitch and Mr. Sargent for their understanding.

We are grateful to Melanie, the school teacher at 9A in hospital, for her patience with Sarah. She never pushed her to work, but tried to encourage her, even though her professionalism would liked to have seen Sarah do more.

We are grateful to Sarah's physiotherapist Sam, who Sarah loved and trusted. Sarah said Sam listened to her about how she felt and how much she could do on a particular day. Being listened to and being taken notice of were very important to Sarah. She would not be fobbed off and overridden just because she was a child.

We are grateful to our families, who have given us never ending support and love over the last year. Sarah knew she was adored, and it made her visits to hospital visits more bearable. She knew she would get lots of visitors and lots of attention.

We are grateful to our 2 beautiful boys who had to endure so much. They made their ownlunches, did their homework and tried to make things easier for us. They spent Sarah's last few days with her and came to realize how much they loved her. They were with her when she died, which I am sure would have touched her deeply.

But most of all, we are grateful to God for giving us such a wonderful, special child. She was in our lives for 10 3/4 years and taught us a lot. We learnt the value of the simple things in life, like being together and loving each other. We learnt to pull together in difficult times and not shut each other out. We learnt that there is a spiritual side to us that we cannot see, but is there nevertheless. We learnt that no person is an island, and how much we need each other. We learnt how much welove our children, and we must never take them for granted.

Sarah touched people's hearts wherever she went. She was giving and loving and a little bit cheeky. If she had an opinion, she'd express it. The boys were amazed the way she could made some insightful comment to me when I was in a raging temper. She would save up little quotes that I'd used on her in a difficult moment, then she would throw them back at me in exactly the right situation that I'd be left speechless. Once she made an observation to me about my behaviour that I construed as cheeky and a little rude, and she said to me "Mummy, it's like you always said, The truth always hurts!"

She was strong natured and obstinate and liked to get her own way. She was a born organiser who organised her group of friends into various clubs, of which she was always chairman, and money collector. She also organized for various staff at the hospital to buy Easter raffle tickets with the agreement she got the bunny and they got the Easter eggs. She was vibrant and happy and full of enthusiasm and love. She was intelligent and artistic. She loved to read the paper when she was well. "Mummy" she said to me one day while reading the paper, "what is a buxom, Japanese geisha, shaven?" She had been reading the personal columns! She found out a lot about her disease by what she read, and knew the signs of advancing lung deterioration. She loved music andbefore voice changes caused by her drugs, she sang constantly and was in the school choir. She played the clarinet well, considering how little she managed to play it in the last year. But more than anything she loved her dog Nissy and was really frightened that Nissy would die one day. She doesn't have to worry about that now.

She was also witty to the end. In one of her lucid spells she asked the date and realized it was April fools day. "I'll think of a trick to play on the nurses" she said with a half smile.

She grew to worship her dad over the last few months. Although it was mum who spent nearly all the time at hospital with her initially, the time dad spent with her was so meaningful to her that she often preferred to have her dad to her mum, given a choice. Mum didn't mind. It is wonderful when you have the love of and love for two parents like she did.

Dad spent a lot of time with her in her last two days just talking. She was asleep most of the time. He spoke to her about the perfect place and what it would be like, not having cystic fibrosis, having a perfect set of lungs and being able to run with her dog all day every day.

FAMILIES

Jean (Mum's) side
Nanna - Netta Milne
Grandpoppy - Doug Milne
Aunty Helen and Uncle Glen and cousins Mason (17yrs) and Emma (15yrs)
(Emma and Sarah had a very special relationship and Emma will feel the loss deeply)
Aunty Sue and Uncle Mauro and cousins Clare (14yrs) and Simon (10yrs)
(Sarah loved Uncle Mauro's wacky sense of humour)
Uncle Ken and Aunty Marie and cousin Jane (2yrs)

Brian (Dad's) side
Gubby (grandmother) - Mavis Cleaver
Grandpa - Richard Cleaver
Uncle Colin and Aunty Pat and cousins Robyn (20's) and Stephen (20's)
Uncle Geoff and Aunty Lyn and cousins Jane (20's), Paul (20's) and Andrew (20's)
( she had a special love for Jane and was thrilled to be her flowergirl)
Uncle Peter and Aunty Denise and cousins Tammy (16) and Scott(14)