My name is Kaitlyn Ann Butler; I was born at the Ballarat Base Hospital on 29.1.2003. My mummy’s name is Rachel; there is just the two of us, but now as I am sick we live with Grandma, Grandad & Aunty Hayley because I am beginning my journey during which I will need a lot of love and help.
My sickness has taken my speech away, I cannot talk anymore, so I’m letting my mummy, grandma & grandpa tell my story.
Our trip to Townsville was a real rest to all of us although busy it was great that Kaitlyns Great Grandmother and family could meet Kaitlyn for the first time and Kaitlyn enjoyed every minute of the trip despite the hot weather.
On arriving back home Kaitlyn stabilized so much that some appointments were cancelled; now she only goes for medication adjustments etc, which was good because we were able to take Kaitlyn on outings which she enjoyed very much.
e.g. outings with Very Special Kids (VSK)and the Ulysses Motor Bike Club at Cardinia Park taking kids with life threatening illnesses and there family’s for a BBQ and ride around the large Weir. Kaitlyn was there as usual, enjoying herself on the lap of mum or Grandma in a side car and loving every minute of it with her cousins as well we all had a fun day it was good to get out and do something different.
T.L.C had a family fun day at Luna Park which was a very cold day, yet another day enjoyed by Kaitlyn and her family she loved the merry go round and lots of other rides too.
Kaitlyns peg had to be changed again so Rachel, Rob and Loretta were working with doctors trying to workout the best way to do it as Kaitlyn does not take to kindly to general anesthetic, at the end we all decided a mic key tube would be best but yes she would have to have anesthetic however the procedure will be quicker as the main part for her gastro tube had already been done, nevertheless it still took a while for Kaitlyn to wake from it and happily she was ok.
Every year VSK has a Christmas party which we all enjoy going to. This day includes face painting, balloons, baby animal farm, food and of cause father Christmas. We then set off to show Kaitlyn and her cousins the Christmas sites at Crown Casino and then off to the beautiful Myer Christmas windows; we all signed a balloon and let it go we all watched it as it floated higher and higher between the tall buildings of the city.
During the VSK Christmas party Kaitlyn presented each cousin with a beautiful Christmas stocking that was hand made by a lovely lady in Tasmania and was also helped by another lovely lady in NSW. Kaitlyns cousins were over the moon with these beautiful stockings that will be treasured by them for ever,
We also gave everyone a bottle of red wine with Kaitlyns label on it.
All this time Rachel (Kaitlyns mother) is busy defining the odd for her one and only child by keeping Kaitlyn free from pneumonia or even a mere cold and always to keep her happy. Since before Townsville trip Kaitlyn has been on oxygen 24/7 and this has never changed.
Rachel wanted to celebrate Kaitlyns 4th birthday with a fairy party and as Kaitlyns breathing was laboring a lot more she decided to hold a blessing day by the new priest from the church Kaitlyn was christened at. Although being a very hot day family, friends and neighbors came to help celebrate Kaitlyns birthday. We had races with the kids in whom Kaitlyn participated in and also face painting etc.
All the children’s parents and friends gathered around Kaitlyn and listened to the priest give her a wonderful service and blessed our beautiful angels life, and his wife sang a lovely song for her. The kids were dressed as fairies and pirates and all had a very good time, Kaitlyns cousins made an unexpected pledge on their own that they will always love and care for her, this to the family showed how much respect and love that they had for little Kaitlyn. She was on the news and in the papers again, “GOOD ON YA KAITLYN!” was the headlines We all signed a balloon with her web address written and special messages from everyone on it and Rachel and Kaitlyn let it go to fly high in the sky and we all watched it disappear into the sunset.
One night Rachel rung us late to say that Kaitlyns breathing was laboring and her temperature was high and her pulse was racing, she rung the ambulance which took her to the Base hospital, they thought she was dieing and called for a chopper team to send her to the Royal Children’s hospital where more intensive care could be administrated.
Kaitlyn was put onto a CPAP machine in the ER which stabilized her breathing but the air ambulance team said she would have to go onto a respirator to transport her but the problem with this was that we may not be able to get her off it again (we had thoughts of this happening many of times and talked about it and we knew that Rachel’s wishes was not just to keep her body alive on life support) so this was not the option here tonight.
Rachel’s decision which was extremely hard to make but over all medico’s saying that Kaitlyn was born in the Ballarat Base Hospital and if it was time for her to go tonight she will die here she is a Ballarat girl. And with apologies to the chopper team we sent them back to Melbourne without Kaitlyn. She was in the ICU for a while they ran tests, the CPAP had stabilized her breathing and she was then transferred to the ward. We were gratefully thankful for the work they done in the ICU to stabilize Kaitlyn and with her will to live for her mum bought her through the night .
Kaitlyn did not fully recover from this attack, but we still especially Rachel made sure she was comfortable as always.
Doctors didn’t know what or how to deal with this unknown disease called MLD and left Rachel to deal with it and in charge of her daughter, this was a giant burden for one person to do and she became a very caring and loving robot on a 24/7 basis and where from the start both lived for each other.
We celebrated Rachel’s birthday 2 days prior to it, Matt, Rachel’s brother came up from Melbourne to help put the final touches to kaitlyns van, it was 2 days later we received a phone call from Rachel at 4am saying “I think I have lost Kaitlyn”, and the 3 of us Rob, Hayley and Loretta was there in record time. Matt had phoned for an ambulance to attend so when we arrived and walked inside the police and ambos were lining the hall and in respected for Kaitlyn and were all bowing their heads, when we seen Kaitlyn she just looked so much at peace and we knew she was out of pain.
That day was very long the day that Kaitlyn Ann Butler had passed away and gained her wings at 4am 7th May 2007. We knew that Kaitlyn had celebrated her mothers birthday 2 days prior and she knew that her Uncle was staying with her mother at that time and that it was a good time to spread her wings, so during that night lying beside her mother she peacefully slipped away.
Rachel’s friends and family gathered around to help her and took her to the funeral home to finalize the funeral plans and to choose a burial site. Rachel chose a tranquil sunny spot next to other children and in a natural setting.
On the Sunday before Kaitlyns funeral which was mothers day we had an open coffin viewing and countless numbers of people came to pay their respects and say there farewells to this little angel. What we saw when we first viewed her body was a site that will live in our minds forever, it was one of an angel dressed in a fairy outfit complete with wand and tiara. By the time that people past by viewing her, the tiny white coffin was full of gifts and mementos for her journey which was such a beautiful site.
Kaitlyns funeral was held on the 14.5.07, where friends and family, doctors, nurses the people from Ballarat and all over Australia came to pay their respects.
On that day Rachel and all our plans just fell into place beautifully. On the side of Kaitlyns little white coffin, the funeral home painted a picture of one of her favorite flowers, the Sunflower, and on top of her coffin was a beautiful wreath full of glorious flowers.
The service by request was held by her priest, and Kaitlyns grandfather Rob said a wonderful speech on behalf of Kaitlyn and how much she has helped everyone it was a very special speech then he played her singing plush dog once again, 3 of her cousins told how they felt about Kaitlyn and there were various people talking of how Kaitlyn had touched them in the past. Kaitlyns Grandma Loretta asked all the Grandchildren (Kaitlyns cousins) to sing the song that Kaitlyn loved and used to smile too, they all got up and sang ‘EVERY BODY CLAP…. (the wiggles song). The children were then asked to draw a picture or write a message on her coffin for Kaitlyn which they loved doing, we then had a presentation slide show of Kaitlyns life that Rachel had chosen with 3 wonderful songs “Streets of heaven”, “Fly” and “Shine your light” to which was extremely overwhelming and tearful blessing of her little life. On leaving the funeral home the traffic was held back by our CFA Dereel.
Kaitlyns coffin was carried to her resting place at the children’s corner by her 4 Uncles and as the priest said his blessing as the coffin was lowered. Bottles of bubbles were handed out so that tiny bubbles were going high into the Heavens as the coffin was being lowered, then 50 pink and mauve large balloons were released into the blue sky it was indeed a very magic funeral for a beautiful girl that helped and loved everyone she touched.
In the end it was the disease that she died of Metacromatic Leukodystrophy.
We are all very proud of our little angles life, and the journey she took all of us through and the love and laughter of a little angel Kaitlyn Ann Butler
29.01.03 – 7.05.07
Eternally asleep at 4.4yrs old and will be missed deeply
Kaitlyns Ballarat to Townsville (7,000 klm trip ’06)
Kaitlyn took the trip to Townsville to meet her Great Grandmother - both are very sick and both to meet for the first time, it was enjoyed immensely with tears of joy streaming down everyone’s cheeks.
She arrived there with a big THANKYOU! to the people who went out of their way to donate and get donations for her like the Publicans of The Atlantic Hotel and their staff and patrons, Rick from Car Works for the Mobile home, Telstra Country Wide for their donation, and to all the beautiful people of Ballarat for their donations, The Courier newspaper and WIN News both in Ballarat and Townsville for their coverage
In Townsville we thank The Begley’s from L J Hooker Townsville for donating their beautiful house for all of us to stay for as long as we needed it, the local Townsville paper and to the many people who gave donations for her journey and those who came up to Kaitlyn and chattered.
It was a great trip; and it was good to see family that we haven’t seen for a while,
Kaitlyn enjoy everything especially lying in her wheel pram on the beach looking at the sunset and feeling the snakes and other animals at a wildlife sanctuary.
Winter 2005
Winter for Kaitlyn brought a few changes and challenges to our lives, not knowing what to expect from this horrid disease or which way it will turn, even though we had some grave concerns at times, mostly of her breathing and vomiting. Our efforts to keep Kaitlyn in a clean, healthy and warm environment to protect her from the fears of fatal chest infections paid off.
The main thing that happened throughout winter was the fact that she now needs 24/7 care and observation. Doctors were still scratching their heads of what to do medically for her but keeping her out of a sick environment like a hospital was a blessing, the doctors still rely on us for the upgrade of MLD from overseas email sauces and the observations of her health and well being.
The saga of Kaitlyn's food, case manager and other entitlements including funding have been a battle because of the rarity of MLD and her young age not fitting the criteria of the other well known diseases. We found that the best way to over come the red tape was to try to do everything ourselves, we as a family do not have the time which it appears agencies and welfare groups have, to argue between themselves thus not coming to any decisions for the responsibility towards Kaitlyns future.
Since the day Kaitlyn was born Rachel wanted to show her off to her great grandmother in Townsville but as they both were not in the best of health they never got to meet face to face, although lack of funds and ideas of how we could transport Kaitlyn to Townsville with all her equipment, feed etc appeared out of the question.
Through an article in The Courier, Telstra Countrywide offered to set up a 2 hour Video Link between Ballarat and Townsville so both Great Grandmother and Great Granddaughter could meet each other for the first time, it was an emotional day for everybody concerned, we appreciated it very much.
One day we set of on a trial run to Dubbo to see if Kaitlyn could cope with traveling however found ourselves turning back to the Base Hospital Ballarat where Kaitlyn was admitted with breathing and vomiting problems we have not tried it again.
Although we have made progress in sorting out some of this red tape, we have had the opportunity to put Kaitlyns case of her ‘RIGHT OF PASSAGE’ to the State Minister for Health, and a Minister for Community Services. After putting forward Kaitlyn's case we felt they were a bit overwhelmed with what we as a family have to do on a day to day base for Kaitlyns health and wellbeing. We hope that this will forthwith bring results between agencies thus helping others as well.
As the warmer weather approached and her sickness seemed to be on a plateau, although taking her cheeky smile from us, our aim now was to keep her mind active and stimulated with outings and socializing e.g. :
• Shopping centres: With her love of people Kaitlyn likes to close her eyes and listen to all the sounds around her opening them just enough to see the presence of bright colourful lights around her. She has made many friends in Ballarat and has become some what of a celebrity that people come and talk to her.
• Open Plains Zoo Werribee: Although we were told at the Children’s Hospital that Kaitlyns vision was ok, over the winter months we saw a slight decline so we thought we would take her to see BIG animals, from a rough bus ride (bush bashing) we showed her Lions, Hippos, Rhinos, Zebras etc. then, to a nice peaceful bush walk seeing Kangaroos, Emus, different bird species, and Australian animals, she enjoyed it so much that she feel asleep in the car going home.
• The Lion King: Kaitlyn went to an opening preview of the Lion King in Melbourne and enjoyed it very much. Listening to its music, singing and watching the dancing she loved it but it was a big, late drive home.
• The Melbourne Aquarium: We have taken her there several times and each time as she enjoys the peace and serenity of the fish swimming around in their watery homes.
• Sovereign Hill Ballarat (gold settlement): We have been there several times with Kaitlyn as she loves to hear the hooves of the Draft horses pulling their carts and the different talk/yelling of the bygone days at the diggings, she just enjoys being outdoors.
• Kaitlyns Make a Wish day: This was held at Maccas where she was presented with her wish box of toys and was celebrated by family and friends followed by a BBQ at her home later.
• Very Special Kids Christmas Party: This was a great day for everyone Kaitlyn loved touching the baby animals in their enclosure and getting her face painted, and seeing some of her cousins who came with us too, but I think she liked the rough ride in running playing games the best and of course Santa!
We with Kaitlyn look forward to more outings like these for her stimulation.
Kaitlyn's mother Rachel has/is doing a marvelous job taking care and knowing Kaitlyns needs 24/7 and because of this doctors etc. are confident in what she has to say about Kaitlyn's needs and one of these is Hydrotherapy.
Rachel, Kaitlyn and Grandparents trot down to a hydro pool twice a week to try to loosen her stiffened muscles; Kaitlyn loves the weightlessness as she floats on the warm relaxing water. It is a precious sight to see Kaitlyn upright in the water for a very short time looking at you eye to eye.
Now we have made it through the first special year and approaching her 3rd birthday 29th January 2006 (which health professionals didn’t think she would make) we look forward in celebrating this Big day with her with hope of many more to follow.
Sunday 1st May, 2005
There we were surrounded by Doctors and Specialists all looking at us and shaking their heads saying “sorry”; we went numb after being told that Kaitlyn would lose every thing she had learned up until this day and wouldn’t learn anything else onward.
We went home stripped of hope, life and with so many questions because we weren’t given any information about Metachromatic Leukodystrophy (MLD) or even how you spelled or pronounced it.
We slept on and off for two weeks exhausted with worry, what to do? Where to start? Where can we get help? All this and trying to enjoy the festive season at the same time.
The Internet turned out to be a Godsend - we learned so much from it and the MLD discussion group from all over the world (then we were family no 101 now there are about 150 families plus and still climbing). Some families rang us asking if they could help us even from the USA & Victoria Australia.
We all decided that Rachel and Kaitlyn lived too far away for any help from us so we shifted them to Grandma and Grandpa's house for help and support until she could find a more permanent house. All this time Kaitlyn was progressing with her speech: “flower”, ”Matt”, ”ma," ”haee” plus other single words, we were wondering if the doctors were wrong with her diagnosis.
Because of Kaitlyn’s poor swallowing and coughing, she began choking and shaking; this became dangerous, her drinking and eating habits eventually declined further and after the Christmas holidays we asked for a Nasal Gastric Tube to be inserted for feeding. Although the tube was successful in weight gain it brought other problems e.g. vomiting, working it into our daily lifestyles - it was an effort in itself as the tube always was either vomited, pulled or sneezed out. The family was confident enough to let Grandma reinsert it as it was quicker than waiting in hospital and Rachel and Kaitlyn were more at ease.
During this time we worked on getting Rachel and Kaitlyn a permanent house in Ballarat closer to hospitals and Kaitlyn’s grandparents.
On Kaitlyn’s 2nd Birthday, 29.01.03, she was in hospital (BASE) with vomiting problems. They allowed her a few hours' leave so she could see and meet her idol Dorothy the Dinosaur live at Bray Raceway; that was one of her best days, she was laughing and smiling all day which made us very proud to be able to do something for her that she would enjoy probably for the rest of her life.
After that back to the BASE Hospital for Kaitlyn’s 2nd Birthday party that was held in the Hospital Foyer. The next day she was allowed day release from Hospital for her Christening; she looked absolutely beautiful like a fairy - all the family and friends came up from Melbourne (2 hr drive) for her morning service. The priest did a fabulous job and everyone enjoyed themselves.
Kaitlyn was slowly losing her gross motor skills. After numerous appointments, Hydrotherapy, Speech Therapy, Child Development and looking into a Cord Blood Stem Cell Transplant (whereupon we were told she wasn’t a good candidate because she was already symptomatic,) we also decided not to put her through the pain.
On the 9th March Kaitlyn had an operation to insert a G-Tube (known as a peg). She didn’t handle the operation very well, she was on an intravenous drip and morphine for pain, she vomited a lot; we started Gastrolight by G-Tube and by 4pm the following day she took it really well although she slept most of the time. She would have body spasms which would stress her out and we believe it gave her great pain.
She started Nutrini (food) at 7pm that night, only 50mls which she vomited up 2 hours later, then they started 20mls per hour over night, raising it by 10mls every hour. This didn’t help as after that feed she couldn’t keep that down either; they stopped night feeds because they were concerned she may vomit through the night and aspirate it into her lungs.
She is also having very bad spasms - the doctors finally gave her Baclofen which has worked very well for her. The vomiting was finally bought under control but her breathing was very shallow and her oxygen was getting down to 90 which was causing some concern, they set the oxygen up just in case. She was put back on Gastrolight and another drip was inserted to get Kaitlyn back on track because she was getting very weak and lethargic, she looked very sick indeed. The doctors started her on half Nutrini and half Gastrolight - she then keep it down and by that night she was on full Nutrini and kept that down too. She picked up really well although her head control is floppier now than before the op. Rachel and Kaitlyn came home after nearly two weeks in Hospital and are happier to be home.
Kaitlyn is now bedridden at 2 years old, but we are all so grateful that she still has her cheeky SMILE!
Although Kaitlyn was supposed to have a muscle reduction operation on the top of her legs to stop her from popping her hip joints out on the 21st March ‘05, specialists decided not to go through with it, turning to Baclofen instead to relieve the leg stiffness.
Two weeks after being at home and getting use to the g-tube Kaitlyn started to dribble really bad and because of her poor swallowing she would cough and splatter and was not able to get her mouth rhythm right. Doctors put her on Artane to dry up the dribble, she also needs Mr.Suckie Sucky - this is what we call the suction machine. Kaitlyn requires chest physio when needed.
At the last hospital appointment we were told to get her affairs into order and that she was starting to lose her vision, as her sight was getting poor and her eyes are starting to turn. We now have to watch out for the killer Winter.
Sunday 6th March, 2005
During Kaitlyn’s first 18 months of her life she progressed as a normal, healthy and cheeky child, then after a virus we noticed she wasn’t well and loosing her ability to crawl.
On taking her to the Royal Children’s Hospital they first diagnosed her with mild Cerebral Palsy; however after numerous tests they diagnosed Kaitlyn on the 13th December 2004 with Metachromatic Leukodystrophy (MLD).
From that day Kaitlyn’s and our families' lives changed dramatically. We had never heard of this disease before let alone knew anyone with anything like this. After researching MLD we started to realise what a vile and debilitating disease this is for which there is no cure, and resulting in shortening Kaitlyn’s life.
Kaitlyn’s eating was getting very poor and she was losing weight, we also noticed she was loosing her ability to eat and becoming extremely lethargic. On the 19th January 2005 a nasal tube was inserted to assist her feeding which has helped her gain weight, but now she has lost the ability to eat orally altogether - because of her poor swallowing it has become too dangerous for her lungs.
