LLTF newsletter June 2012

Newsletter JUNE 2012

NEWS. UPDATES. FEATURES. EVENTS.

www.lifeslittletreasures.org.au

OUR MISSION & WHAT WE DO Who are we?

The Life’s Little Treasures Foundation is a National Australian charity which is dedicated to providing information, support, friendship and assistance to families of children born prematurely or sick. Our services are available in the hospital (neonatal and special care units) and in the community when families come home. It is run by those whom themselves have had a premature or sick baby and understand the challenges that these babies and families face.

Our Mission To ensure that no family endures the traumatic and life changing experience of having a premature or sick baby without easy access to critical information and community support to help them through their journey

What we provide • Informative website and PDF information sheets • iPhone app which provides critical medical information for NICU and SCN • iPhone app which helps parents track their premature baby’s development • Free hospital survival folder for parents • Electronic home survival guides & e-newsletters • Education based information seminars • Community support groups • 24 hour support line 1300 MYPREMMIE • Parent support network • Online community through Facebook/Twitter • Family social activities/events (incl annual National Charity Fun Run /Walk -“Walk for Prems”) • Access and encouragement for family involvement in relevant research The Life’s Little Treasures Foundation believes that education and information for parents is crucial to get the best outcomes for premature and sick babies; it empowers families and enables them to become their child’s advocate.

Life’s Little Treasures Foundation PO Box 476 Chadstone Centre RP, Victoria ACN 143 037 834

ABN 94 232 874 269,

DISCLAIMER: All material on this newsletter is provided for your information only and may not be construed as medical advice or instruction. No action or inaction should be taken based solely on the contents of this information; instead, the Life’s Little Treasures Foundation suggests that readers should consult appropriate health professionals on any matter relating to their health and well-being or the health, development and well being of their children. The information and opinions expressed here are believed to be accurate, based on the best judgement available to the authors, and readers who fail to consult with appropriate health professionals /authorities assume the risk of any injuries. In addition, the information and opinions expressed here do not necessarily reflect the views of every contributor to the LLT newsletter.

FIND US ON FACEBOOK AND TWITTER

1300 MYPREMMIE (1300 697 736)

PRESIDENTS WELCOME Can you believe it, we are nearly half way into 2012! So much has happened in the last few months that it only seems like yesterday that I was writing my President’s welcome for the last newsletter.

Since the September issue last year, we have been busy on many fronts.

November saw our second Walk for Prems event which went national with over 2300 people taking part at 7 venues throughout Australia, raising over $100,000. Thank you to everyone who took part and especially to those who fundraised for us. Without your efforts, we would not have achieved our fundraising goal. This year plans are already in place for Walk for Prems 2012 which will be held on 28th October. Put this date in your diary and tell all your family, friends and colleagues as it will be even bigger and better.

November also saw the launch of the first of our two world’s first apps for iphone/ipads,The Premature Baby Journal with our second app NICU words shortly after. Within 3 months of their launch, we had over 2500 downloads in 47 countries! Just goes to show the need that parents worldwide have for information and tools to help them navigate this journey.

In the last six months, we have also been revaluing our goals. In particular, we have been looking at our programmes and services to make sure that they are being developed in line with our mission “to ensure that no family endures the traumatic and life changing experience of having a premature or sick baby without easy access to critical information and community support to help them through their journey” As we embark on this next stage of our journey, we are creating a whole new look to help ensure we remain committed and relevant to our families and appealing to our partners. It’s time for us to change in how we look so that we can continue to grow and meet the needs of our families. We are all excited by this change which we will be launching in August. We hope you love it as much as we do!!

We have also seen more and more of our community become involved with LLTF and in particular fundraising for us. Without your efforts, we would not be able to exist – thank you very much. I would love to mention everyone individually but if I did, I would turn this into a thesis! However, I would like to mention one person, Angela Jacobsen who has written a book called Baby Love, an A-Z of bringing up babies. Angela is donating 10% of her sales to LLTF - thanks Angela.

Sadly in April this year, we had some very sad news when our dear little treasure, Jack Hanson-Clarke, son of our wonderful ambassador Brooke Hanson-Clarke, passed away after battling a 9 month fight. In Brooke’s own words “he will always be remembered as the boy with the brave heart and that fighting Aussie spirit.” In his short time, he brought people together and touched lives of many. We will always remember him and treasure him in our hearts.

Wishing you all a safe and healthy winter.

Warmest wishes,

Parool

President, LLT

PREMMIE HEALTH

UNDERSTANDING PEG FEEDING Preemie parents are all to familiar with the nasal tube for feeding and some of our babies go home still requiring this method of feeding however in some situations a PEG may be required.

What is a PEG? It stands for Percutaneous (through the skin) Endoscopic (via an endoscope) Gastrostomy (to the stomach). Its a tube placed through the abdominal wall directly into the stomach, providing food and nutrients in liquid form.It may also be known as a G-tube.

A PEG is one of three options for tube feeding the others being a nasogastic tube (through the nose to the stomach) and PEJ (percutaneous, endoscopic, jejunostomy, through the abdominal wall to the small intestine).

A PEG may be required for several reasons these are just a few; prematurity, aspiration, severe reflux, refusal to eat, head injuries etc. In some cases they may be provided to people who can still eat but require extra nutrients.

How is it performed?

A PEG tube for children is generally conducted under general anesthetic, an endoscope is passed through the mouth down to the stomach to find a suitable position to place the PEG tube, a small cut is made in the abdominal wall and the PEG tube is then placed inside the stomach and comes out through the incision. Attached to the tube is a small disc which lies close to the skin to prevent movement and a small clamp or plastic cap, which keeps the tube closed when not feeding.The whole procedure usually takes about 20 – 30 minutes.

Stage 1

In children sometimes a low profile device (known as a ‘button’) is put in place as it’s easy to disguise under clothing, harder to pull out and safe to swim with.

1. With ‘Button’: www.infantreflux.org

Advantages of a PEG for children: • Less interference with daily activities • Can be hidden under clothes • Cannot be pulled out • Feeding can be done at night when child is asleep • Some tubes are designed to last a few months or even up to a couple of years • Tube can be removed when no longer required • Less time feeding

Disadvantages of a PEG for children: • Infection • Leaking • Blockage • Oral aversion / Sensory Issues * Please note: Professional advice on PEG Feeding should always be discussed with your doctor or specialists.

REFERENCES: • www.corecharity.org.uk/Peg-Feeding.html • www.pedisurg.com/pteduc/tube_feeding.htm • www.health.qld.gov.au/nutrition/resources/

etf_tfah.pdf

Stage 2

Stage 3

2. With PEG Tube: www.maximiliansantos. blogspot.com.au/

Helpful Sites & Articles GASTROSTOMY SUPPORT SOCIETY (GISS):

www.scopevic.org.au/ index.php/site/resources/ gastrostomies GASTROENTEROLOGICAL SOCIETY OF AUSTRALIA:

www.gesa.org.au/

COMPLEX CHILD: DISSOLVING MEDS FOR FEEDING TUBE ADMINISTRATION:

http://articles.complexchild. com/may2012/00381.html

Stage 4

Life’s Little Treasures Foundation PO Box 476, Chadstone Centre RP, Victoria Website: www.lifeslittletreasures.org.au

PROUD PREMMIE JOURNEY

Two amazing stories of Little Treasures who have battled feeding issues

O

ur Max was born 6 weeks prem and very sick with a rare lymphatic fluid condition. Max spent his first 3 months in NICU with the majority of that time ventilated, as well as having chest drains to continuously drain re-accumulating fluid off his lungs. Due to his illness and condition he was fed via a nasal gastric tube.

By the time Max was strong and well enough to come off oxygen and be introduce to a bottle he was very reluctant. He would occasionally take a small amount but would always bring it all up again, he had severe reflux and the medication didn’t seem to help.

At just over 3months of age we finally got to take our baby home. He came home with the NGT still in. My husband Steve and I had to have several lessons on using and changing his tube before taking him home, and although we desperately wanted him home, we were both terrified of having to insert the tube ourselves.

We persisted daily with the bottle yet his reluctance grew. He would often scream at merely the sight of the bottle. His reflux also became worse and the projectile vomiting continued after every feed. We were so worried, we took him to see several paediatricians and specialists trying to get to the bottom of it. We kept being told to up his medication or try a new one, yet we knew there was more to it so we persisted. It was eventually discovered that his oesophagus was quite damaged from his constant vomiting; it was burnt and scarred from the acid of his reflux. His oesophagus had also become ‘disorganised’ as a result of the reflux, so instead of just working to push his milk down, it was also pushing the milk back up. No wonder he wouldn’t drink. We were instructed to only feed him via his NGT for a few weeks to let his oesophagus heal and to only do so whilst he was asleep, to avoid the vomiting. We did this for several weeks and it was working, we were managing to keep his feeds down he started gaining weight.

After a few weeks we went back to encouraging Max to take a bottle. We assumed that now he was feeling better and his oesophagus would be healed he would be keen to feed orally. Well we were wrong! Max refused and protested like never before. We did everything we could; we

MAX’S STORY

saw speech therapists, different paediatricians and tried waiting until he was hungry, but all to no avail.

Everyone kept talking about him having an ‘oral aversion’, which we didn’t really understand what that meant. I researched it and got online to other mums of tube fed kids and felt so awful to learn that our baby had been so traumatised by all the medical intervention (i.e. tubes etc. down his throat from birth) as well as the reflux, that he actually feared feeding orally.

Max continued to vomit and refuse a bottle so we continued to feed him via his NGT, only while he slept. We felt the most important thing at this stage was to just get the nutrients into him and avoid him bringing it all back up, although we

...his reluctance grew. He would often scream at merely the sight of the bottle.

Phone: 1300 MYPREMMIE (1300 697 736) Email: contact_us@lifeslittletreasures.org.au

“As parents, the most natural instinct in the world is to want to feed your child, but when your child won’t feed it can cause much distress.”

couldn’t do this forever. We felt lost and confused at what to do, so decided to sort help from The Royal Children’s Hospital in Melbourne. We found a wonderful team there; they ordered new tests and did everything with urgency. The doctors explained to us that Max’s reflux was so severe that he needed surgery. They stressed to us that each time Max vomited there was risk of aspiration and they’d discovered white marks on his lungs, which indicated this was already happening.

At 6months of age Max had an operation to stop his vomiting, a fundoplication and at the same time he had a PEG inserted in his tummy. I remember the shock I felt when he came out of surgery and I saw the PEG(micky button) in his tummy for the first time. I’d seen pictures of what it looked like but just seeing it in my baby’s tummy was different.

It took a while to get used to but didn’t seem to bother Max in the slightest.

Max recovered well from the surgery and we were taught everything about using the PEG. Life became a little easier as the vomiting stopped all together and we no longer had to worry about the trauma of re- inserting the NGT all the time. Max did although continue to try to vomit so wretched whilst being tube fed. We had to feed him very slowly to avoid this happening so w we continued to feed him overn overnight, whilst he slept, then one or two faster feed during the d day. We would hook Max up to his feeding pump at night and feed him at a rate of 50m 50mls per hour over 12hours, and then during the day we’d often set his machine up at his high chair and feed him at 100ml per hour with som some food on his tray. He’d also have another tube fee feed while he had his sleep du during the day. All together Ma Max was hooked up to his ma machine for up to 18/24 ho hours a day due to the slow rat rate he required.

Having a child that is tu tube dependant can be q quite time consuming and is isolating for both the child aand parents. We were cconcerned that Max was

missing out on vital developmental play time and experiences as well as the sensory development that comes with eating, drinking in experiencing tastes and textures of foods. There was nothing wrong with Max’s swallow or ability to eat and drink now, his oesophagus was now healed, he no longer vomited, it just all came down to the oral aversion i.e. fear of eating and swallowing.

At the end of the day Max required tube feeding to save his life. We have no resentment about Max being tube fed and getting the PEG put in when he was 6 months old was the best thing we ever did. Before the PEG, Max was pulling his NGT out almost daily. For the first few months I’d spend almost every day at our local hospital getting them to re insert his tube, as my husband and I found it too stressful to do ourselves. Eventually though, it became so frequent, I just had to toughen up and do it myself. We also used to worry that he would pull it out during the night feeds. The PEG was the safest option for Max. The most difficult thing for us was making the transition from being tube dependant to oral feeding.

As parents, the most natural instinct in the world is to want to feed your child, but when your child won’t feed it can cause much distress. Also every child is different, yet we found ourselves comparing Max to other kids that went home from NICU with a tube, but were now off all tube feeds. Most kids seem to slowly but surely overcome their aversion, with the help of a speech therapist and/or dietician, but not Max. After exhausting all avenues, for helping Max to overcome his oral aversion, we decided to take Max to Graz in Austria. The University Hospital of Graz has a feeding clinic specifically for weaning kids like Max from tube dependency to full oral feeding. They do offer online ‘net coaching’ for parents choosing to do it themselves at home, with their guidance and support, but as Max has other medical issues we needed to take him there. It was a tough, intensive program but we now have Max eating and drinking! Max is now 2.5 years old and we look forward to him starting 3 year old kinder next year and packing his ‘play lunch’ to eat with all the other kids.

Written by Mum

Kirstie

Life’s Little Treasures Foundation PO Box 476, Chadstone Centre RP, Victoria Website: www.lifeslittletreasures.org.au

PROUD PREMMIE JOURNEY

EMMA’S STORY

M

y 6 year old daughter Emma has been diagnosed with Sensory Perception Disorder (SPD) which manifests itself as extreme oral aversion. She was born very premature at 26+4 weeks weighing 510 grams and spent 93 days in hospital for.

To date she has not eaten solid foods in her life.

She exists solely on liquid formula of which has to be presented to her in a certain way, in a certain cup. She gags at the smallest of crumbs in her mouth, and shuts down if food is put on her hands or in front of her.

At the start of the year, we made the big journey over the United States to attend the STAR Centre in Denver, for their intensive feeding course or SOS program. The SOS, or Sequential-Oral-Sensory program was created by Dr. Kay Toomey, and she heads the feeding program there and it is the best in the world for treating children who are as severe as Emma. It was an intensive five week program which involved hitting all aspects of her sensory issues.

Food school at the STAR Centre utilises sensory, motor, oral, behavioural and learning factors into their teachings. It also offers an indepth evaluation on the severity of the sensory issues of child.

A typical day at the STAR centre involved Emma spending time doing occupational therapy – in both gross motor skills and fine motor skills, SOS Feeding therapy, Physiotherapy to help with core strength, and psychology. It was a very intensive full-on and overwhelming course. You can read our story and progress at our blog http://feedingemma.blogspot. com.au/ Here is an outline of Emma’s first day at food school, taken from the blog.

Today was Emma’s first big feeding class. Or as they call it - food school. and OMG, it was amazing to watch it all. We have done something similar in the past, but we are learning all about the little nuances of the program, and learning to read Emma’s body language of when things cause her

stress or worry.

We start off doing big body prep in the gym.

There the feeding therapist, who’s name is Lainy, had set up an obstacle course.

This is to help with three different areas:1. Proprioception (Proprioception doesn’t come from any specific organ, but from the nervous system as a whole.

Its input comes from sensory receptors distinct from tactile receptors — nerves from inside the body rather than on the surface. Proprioceptive ability can be trained, as can any motor activity) 2. Core strengthening, 3.Tactile sense So we have warmed the body up. The next step is transition where we march to the feeding room singing a song and clapping. This also helps to regulate her breathing and also helps with proprioception.

The first thing we do when seated in the feeding room is blowing some bubbles. This is to help with her breathing and her oral motor skills. It also helps with endorphin production. It is important to get the endorphins flowing so they can help counteract adrenaline which is created by the fight/flight response. This fight/flight response is a common reaction to children with SPD, but the problem is that it causes adrenaline to be produced which shuts down the appetite. So you can see how important it is to make sure that Emma does not get stressed or worried or want to escape.

We move from blowing bubbles to table bubbles and hand washing. So it is all tactile - allowing Emma to play with the bubbles and clap her hands and get involved and enjoy the bubble blowing activity. A face washer was then introduced which

“Food school at the STAR Centre utilises sensory, motor, oral, behavioural and learning factors into their teachings.”

Phone: 1300 MYPREMMIE (1300 697 736) Email: contact_us@lifeslittletreasures.org.au

“Emma has done similar work with her therapist back in Australia, but without all the psychological work and background to it.

It is all falling into place and we can see how this will be immensely beneficial for Emma.”

For more Information: The STAR Centre’s web address is www.starcenter.us They have more information on their programs that are available.

gives Emma an escape outlet when things get too stressful for her.

The face washer is an important aspect of the feeding therapy, as they are trying to teach Emma how to do “sensory based problem solving”. There are three steps for this: 1. Reassure - we need to verbalise to Emma, its okay, you are doing well - you have your face washer to help you. She should then start to internalise these thoughts.

2. Label the sensory issue / problem - is it too wet, too bright, too big or too small.

3. Give a better solution - wipe off, cover up, change it, blow away Nine different foods were introduced to Emma, and it was interesting watching her response to it. We found that large food items in her personal space was distressing for her - she exhibited stressful actions such as wide eyes, splayed fingers, no eye contact, but once broken up into pieces she was able to tolerate it in her space.

At no stage today was she encouraged to put food to her mouth, it was just play based.

When she got upset or stressed, the item was then taken away from her and her attention diverted. Though she was showing strong aversion to coloured sprinkles. We believe that is because she could not control where the sprinkles went - so thus they were everywhere. A complete table clean was required after a couple of minutes.

A food chopper was also introduced. This plays into the part of teaching Emma the physics of food. The food chopper was said that it was big teeth chomping down on food, making smaller pieces - just like teeth do.

So on the scale of the 32 steps

to eating - Emma managed to get to step 10. This means that she was able to touch certain foods with her whole hand.

It sounds like a slow process, but they are taking her back right to the start again and start teaching her the eating behaviour. She gets along fantastically with her therapist and the rapport between them is going to help Emma go a long way.

Saying this, Emma has done similar work with her therapist back in Australia, but without all the psychological work and background to it. It is all falling into place and we can see how this will be immensely beneficial for Emma.

So another full on and exciting day for us here at Food Camp in Denver. Time to relax and prepare ourselves for tomorrow. :-) We are now home after that massive journey, and even though Emma is still not eating, she has made enormous steps forward in her sensory issues, and we can only hope that she will start eating in the not too distant future. We continue on with food school every day, and family food school once a week. It is tough doing it on our own, but we refuse to give us.

Written by Mum

Roz

Life’s Little Treasures Foundation PO Box 476, Chadstone Centre RP, Victoria Website: www.lifeslittletreasures.org.au

RESOURCES

SUPPORT SITES Tube Fed Kids Facebook: www.facebook.com/pages/TubeFed-Kids/101810896550562 Website: www.tubefedkids.ning.com Tube Feeding Awareness Facebook: www.facebook.com/ FeedingTubeAwareness Website: www.feedingtubeawareness.org Tube Fed Children Website: www.facebook.com/ groups/112805439838 Is your child Tube fed / Peg fed ?

Facebook Page: www.facebook.com/ groups/2399313489 Blog: www.facebook.com/ groups/2399313489/#!/ groups/2399313489/members Australian Support Network for Eosinophilic oEsophagitis Facebook: https://www.facebook.com/ groups/ausee/ Website: http://www.ausee.org

SERVICES no fuss feeding + swallowing centre Website: www.nofussfeeding.com.au/ no_fuss.html Tube Feeding at home Queensland Health Services www.health.qld.gov.au/nutrition/resources/ etf_tfah.pdf

TUBE WEANING & FEEDING PROGRAMS NoTube – University Hospital of Graz, Austria NoTube offers services to parents and professionals affected by children with early eating behavior disorders, particularly tube dependency. NoTube’s experts have weaned more than 1’600 children off their feeding tubes over the past 20 years. http://www.notube.at/ The STAR program (USA) SOS Feeding is a transdisciplinary program for assessing and treating children with feeding and weight/growth difficulties. It integrates sensory, motor, oral, behavioral/ learning, medical, and nutritional factors and approaches in order to comprehensively evaluate and manage children with feeding/ growth problems. It is based on, and grounded philosophically in stages and skills of feeding found in typically developing children. www.starcenter.us

FURTHER READING LLTF Article – Weaning Program for Tube dependant Children www.lifeslittletreasures.org.au/prematurityresources/support-for-families/prematurityarticles/weaning-program-for-tubedependant-children/

“Hope is the companion of power and the mother of success, for those of us who hope strongest have within us the gift of miracles” SYDNEY BREMER

Phone: 1300 MYPREMMIE (1300 697 736) Email: contact_us@lifeslittletreasures.org.au

Life’s Little Treasures Foundation Apps available at Apple App Store NOW! Life’s Little Treasures Foundation has developed two iphone apps to help families of premature and sick babies.

46)1%896) &%&= .3962%0 %44 The first of its kind in the world, the Premature Baby Journal is a global phone app that offers parents of a premature or sick baby an easy to use tool to keep track of vital informatio on about their baby’s feeds, growth and development.

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time of feeds, amount of 4 Records baby’s birth details feeds and method of feeed 4 Keep journals for 4 Records total feeds giveen multiple babies to baby per day, numbeer 4 Converts actual age into of expresses and amounnt corrected age (weeks) expressed by mother 4 Tracks weight, feeding, 4 Journal section for parents expressing and to record their emotions temperature in graphs and feelings 4 Tracks milestones 4 Set reminder for questions and allows you to to ask during doctor’s upload photos rounds in hospital 4 Records number of feeds,

*6)) 2-'9 ;36(7 %44 Having a child that is born prematurely or sick exposes you to the world of NICU (Neonatal Intensive Care Units) and SCN (Special Care Nurseries) where it can sometimes feel like people are speaking a foreign language. NICU Words is a glossary designed to provide clear explanations of medical terms, medical machinery and the medical roles of personnel in NICU and SCN. *IEXYVIW SJ XLMW ETT

4 Concise list of medical terms and medical machinery 4 Description of roles of medical personnel in NICU 4 Handy word search function 4 Over 170 words and terms featured

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Life’s Little Treasures Foundation PO Box 476, Chadstone Centre RP, Victoria Website: www.lifeslittletreasures.org.au

THANKS

We can never thank enough all those that fundraise for the Foundation throughout the year, we couldn’t do it without them, every dollar raised helps us continue our services and help families. No amount is too small it all goes towards the one goal.

WE’D LIKE TO SAY A BIG THANK YOU TO THE FOLLOWING: ❤ Mark Woodland and his team who took part in the Tough Mudder in March in Melbourne. A seriously hard course to cover and they all did it. Well done guys. ❤ Sonia from Restore Beauty and Skin Clinic Ashburton (www.facebook.com/pages/Restore-Beauty-Skin-Clinic/210295625672643) and the team from Curves who held a charity day with all funds raised going to the Foundation. A great gesture and we thank them all. ❤ Kristy a soon to be bride who bought our cute little “Walk For Prems” pin as a bonbonniere gift for all the wedding guests instead of a present. A great idea we hadn’t thought of, great thinking Kristy. ❤ Celeste who’s gorgeous little girl Tahlia turned 1 during April, Celeste turned her birthday into a fundraiser for the Foundation and asked everyone who came to donate. Thank you so much Celeste & Tahlia. ❤ Annabel Jones from Stroller and Prams www.

StrollersAndPrams.com very kindly auctioned a brand new Mima Xari pram on eBay and raised some great funds. A big thank you to Annabel, a great easy idea. ❤ Brooke, whose daughter Elise turned one in April, Brooke started an Everyday Hero fundraising page in her name as asked friends & family to donate to it in lieu of gifts. A very generous idea. ❤ Mum Kelley who has now run two very successful auctions for us on Facebook and raised a lot of funds. She puts in such a lot of hard work and we can’t thank her enough for all she does. ❤ The Telstra foundation for their generous grant, we greatly appreciate it ❤ The Tasmanian Community Fund for their generous grant to enable us to produce hospital packs to help families in Tasmania.

TAX HELP

End of Financial Year

What does that mean for you?

Having a premature or sick baby can put a big financial strain on any family, with end of year just around the corner, are you aware of what you may be eligible to claim for?.

Medical Expenses You can claim a tax offset of 20% of your net medical over $1,500. There is no upper limit on the amount you can claim. You can claim for medical expenses relating to an illness or operation paid to legally qualified doctor, nurse or chemist and public or private hospitals. Other areas you may be able to claim for are hearing/medical aids.

To get more information on what you may be eligible for go to the Australian taxation dept website at www.ato.gov.au Or call their customer service line on 13 28 65 and ask for a Tax Pack & a Tax Pack Supplement for 2011

Child Care Rebate and Child Care Benefit To help with child care costs, the Australian Government offers two types of financial assistance: the Child Care Rebate and the Child Care Benefit. Further information on these rebates can be found on the mychild website at www.mychild.gov.au/ childcarerebate or call Centrelink Family Assistance office 13 61 50

back on a range of children’s education expenses. For the 2010–11 tax year refunds may be as much as $397 for every child at primary school, and up to $794 for every child at secondary school. The amount of the refund increases each year by the Consumer Price Index.

For further information go to www.educationtaxrefund.gov.au

Education Tax Refund The Australian Government is helping you with the costs of educating your kids. The Education Tax Refund provides up to 50%

Phone: 1300 MYPREMMIE (1300 697 736) Email: contact_us@lifeslittletreasures.org.au

HEROES

FOUNDATION FUNDRAISERS Currently we have 10 amazing people fundraising for us through Every Day Hero

Feeling Sporty?

Then perhaps you’d like to fundraise while taking part in one of these great sporting events.

★ Mum, Kelly Wilton, who will be running in the Gold Coast Airport Marathon on 30 Jun 2012 - 01 Jul 2012. Big thank you to Kelley for setting up a fundraising page while doing this, if you would like to donate to her run her fundraising page is www.everydayhero. com.au/kelly__wilton_5 ★ Mum Sharee George who will be taking part in the Age Run Melbourne on Sunday, 15 July 2012. This is Sharee’s third year supporting us in this run. Go Sharee!!If you would like to support her, Sharee’s fundraising page is www.everydayhero.com.au/ sharee_george_1 ★ Monika Ross who is taking part in the Sydney Half Marathon and has set up a fundraising page at www.everydayhero.com. au/monika_ross ★ Mum Stacey Harding who has set up a fundraising page after the birth of her daughter Milla, who was 27 weeks, weighing a tiny 638 grams. If you would like to support her, Stacey’s fundraising page is www.everydayhero.com.au/stacey__harding ★ Maria Hill who has set up a fundraising page after the birth of her daughter Milla Alicia. Maria’s fundraising page is www.everydayhero.com.au/maria_hill ★ James Boocock who will be running the 100km ultra trail run in the Blue Mountains, his fundraising page is www.everydayhero.com.au/james_ boocock ★ David & Taryn Lester, who will be taking part in the Gold Coast Airport Marathon in July, their fundraising page is www.everydayhero.com.au/ team_lester And ★ Mum Kelley who is fundraising via an online auction for the Foundation. Details can be found at www.facebook.com/pages/Fundraiserauction-for-Lifes-little-treasuresfoundation/182860545128588 ★ Mum Kirsty Aspinall who is asking all those that come to her daughters first birthday to make a donation to the Foundation in lieu of gifts, such a kind thought!

• Gold Coast Airport Marathon: 30 June - 1 July 2012, Gold Coast • The Age Run Melbourne 2012: July 15, Melbourne • The 2012 Sun-Herald City2Surf: Presented by Westpac.August 12th, Sydney • 20th Annual Pub2Pub Charity Fun Run & Walk: 26 August, Northern Beaches, Sydney, • Sunshine Coast Marathon 2012: 26 August, Sunshine Coast Marathon • Cycle Queensland 2012: 8-16 September. The inaugural Sunshine Coast Marathon will cover 570km along some of Queensland’s most spectacular coastline.

• Suncorp Events -various All events information can be seen & fundraising pages set up through our online partner Every Day Hero at the LLTF page: www.everydayhero.com.au/charity/view?charity=739 There are so many fun events to choose from, we be thrilled if you picked one for the Foundation!

Life’s Little Treasures Foundation PO Box 476, Chadstone Centre RP, Victoria Website: www.lifeslittletreasures.org.au

Other events you can take part in are: NSW: TOUGH MUDDER

Date: Sat 22 Sept – 23 Sept, 2012 Tough Mudder events are hardcore 18-20 km obstacle courses designed by British Special Forces to test your all around strength, stamina, mental grit, and camaraderie. As the leading company in the booming obstacle course industry, Tough Mudder has already challenged half a million inspiring participants worldwide. Get a group of buddies together and give it a go!.

Event Website: www.toughmudder.com.au/events/sydney/ Fundraising Website: www.everydayhero.com.au/charity To preregister: For any of next year’s Tough Mudder events go to: www.toughmudder.com.au/events

HOW TO GET INVOLVED IN FUNDRAISING The Life’s Little Treasures Foundation has many projects which we are currently involved in. There are many more we wish to begin but in order to achieve our goals we need to have adequate funding. It is our ultimate aim to ensure that no parent who has had a premature child should be left without support, friendship & guidance. Through our projects we hope to ease the journey these families find themselves on.

There are two ways to fundraise: We have taken the difficult part out of online fundraising and made it Online: easy with our online fundraising partner Everyday Hero at: www.everydayhero.com.au/charity/view?charity=739 Now all you have to do is think of a fun idea, it can be anything you want. To get you started, we have put together a few great fundraising ideas:

A very big thanks to these great LLTF supporters, the Foundation is very dependent on the donations it receives from the community and we are grateful for all their hard work.

www.lifeslittletreasures.org.au/get-involved/fundraising

Have a look and see if any appeal to you.

If you would rather not raise money online you are more then you Offline: are welcome to do it yourself. Just contact us & let us know & if there is anything we can do to help you with your idea we will.

HAVE YOU CHANGED YOUR ADDRESS OR CONTACT DETAILS? If you have changed your address or contact details, please notify us by emailing contact_us@lifeslittletreasures.org.au

Phone: 1300 MYPREMMIE (1300 697 736) Email: contact_us@lifeslittletreasures.org.au

2011 WALK FOR PREMS

WALK FOR PREMS CHARITY FUN RUN/WALK 2011 On the 6th of November 2011 at locations throughout the country, families, friends and supporters walked for these special babies to help raise funds for the Life’s Little Treasures Foundation.

The major walk/fun run was held at Albert Park Lake in Melbourne where participants could take part in a timed 10km run, 5km run or 5km walk. This was followed by a wide range of entertainment including music, jumping castle, animal farm, face-painting and much more, with lots of families bringing picnics.

Sydney, Hobart, Adelaide, Perth, Shepparaton and Alice Springs held smaller events consisting of a social walk and BYO picnics. We were thrilled to that 2,300 people attended the event throughout Australia and raised $100,000.

This was a fantastic result and thank you very much to everyone who either donated, sponsored or contributed in some way to achieve this figure.

$100,000 RAISED!

Thank you to the Foundation’s wonderful supporters for helping us to raise awareness and funds to help families of premature and sick babies.

Participants of the 2011 Walk For Prems

Life’s Little Treasures Foundation PO Box 476, Chadstone Centre RP, Victoria Website: www.lifeslittletreasures.org.au

Participants of the 2011 Walk For Prems

JOIN US FOR THE THIRD ANNUAL

WALK FOR PREMS Raising Awareness of Premature Births SUN 28TH OCT 2012 Main walks will be held in Melbourne, Sydney, Canberra, Launceston, Perth, Adelaide, Alice Springs

Book it in!!

(I have!)

s ration t s i g e R n open si t!

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To be kept up to date with what’s happening join the “Walk for Prems” Facebook page at: www.facebook.com/lifeslittletreasuresfoundationWalkForPrems

So dust off those walking shoes and getting training!

Phone: 1300 MYPREMMIE (1300 697 736) Email: contact_us@lifeslittletreasures.org.au

EVENTS

Diary Dates PARENT SUPPORT GROUPS AND MORNING TEAS Life’s Little Treasures Foundation organises Parent Support groups at various venues throughout Victoria, details below.

This is a great opportunity for parents with premature babies to have a cuppa and chat and meet other parents in a similar situation. All venues are free of charge. Come along and see what else we can offer.

Looking forward to seeing you there. Call us on: 1300 MYPREMMIE (1300 697 736).

*CHADSTONE/MALVERN Dates: 2nd Friday of the month Time: 10am – 11.30am Venue: Phoenix Park Neighborhood House Address: 22 Rob Roy Road, East Malvern VIC 3145

*DANDENONG / EUMEMMERING Dates: Last Friday of the month (excl. school holidays) Time: 10am – 11.30am Venue: Early Learning Services Centre Address: 54b Princes Hwy, Eumemmering Co-ordinator: Rowena

*MAROONDAH / KNOX Dates: 2nd Wed of the month Time: 10am - 12pm Venue: Koolyahgarra, 7 Church Street, Bayswater. (Melway 64 E3, 5 mins walk from Bayswater station.)

Co-ordinator: Karin

*SUNNINGDALE MCH CENTRE Dates: 1st Friday of the month Time: 2.30pm – 4pm Venue: Sunbury Maternal Child Health Centre Address: 511 Elizabeth Drive, Sunbury (Melway 382 A3, off gap road, ) Co-ordinator: Maternal & Child Health Nurse – Rebecca Long Cost: Free

*TRARALGON When: Last Friday of the Month (except school holidays) Time: 10am – 12pm Venue: Good Start Early Learning Centre, 1 Conway Court Traralgon (Corner Park Lane and Conway Court) Parking at rear of centre off Conway Court and Park Lane Co-ordinator: Rachael Centre Phone: 51760440 Cost: Free Dates: 29th June, 27th July, 31st August, 28th Sept,2 6th Oct, 30th Nov, 28th Dec

TASMANIA *NORTH WEST COAST SUPPORT GROUP Day: 1st Monday of every month Time: 10.00am Venue: Burnie Community House Address: 24 Wiseman Street, Burnie, 7320 Co-ordinator: Amanda Cost: Free Meetings are held in the second house, on the right hand side as you enter the main gate.

*LAUNCESTON SUPPORT GROUP Day: 3rd Wednesday of every month Time: 10.00am Venue: Child and Family Centre, Ravenswood

Address: Prossers Forest Road, Ravenswood Co-ordinator: Jenna Cost: Free

HOSPITALS This provides a great opportunity for parents with babies currently in NICU/SCU to meet parents who have been through this experience before.

These morning teas are only available to parents who currently have babies in NICU/SCN at the hospital.

* ROYAL WOMEN’S HOSPITAL AFTERNOON GROUP Day: First Wednesday of every month (except during school holidays/Public Holidays) Time: 3.30pm – 4.30pm Venue: 4th floor (NICU) – Parents Retreat Room Co-ordinator: Alex & Meaghan EVENING GROUP Day: Last Wednesday of every month (except during school holidays/Public Holidays) Time: 6.00 – 7.00pm Venue: 4th floor (NICU) – Parents Retreat Room .

Co-ordinator: Alex & Meaghan

Volunteering at the Foundation It is through the dedication of this volunteer network that LLT is able to consistently remain able to provide these services to families in hospital (neonatal and special care units) and in the community when families come home.

The Foundation is very grateful to have to have such a dedicated and amazing team of people who all come from many different walks of life but who all share a common goal and wish to give back to the community. There are many ways in which our Volunteers can assist LLT such as: • Being part of the main LLT working committee • Assisting with Marketing /PR/Design • LLT Newsletter Production • Parent Support Network • Fundraising events • Social Events • Support Groups • Busy Bee Days • “Walk for prems” – charity fun run / walk

If you would like to find out more about volunteering, please call us on: 1300 MYPREMMIE or email us at: volunteer@ lifeslittletreasures. org.au

If you are interested in assisting LLT in any capacity then we would love to hear from you, not all volunteers are required to sit on the committee but certain roles do require a Working with Children Check.

Download the volunteer registration form our website at – www.lifeslittletreasures.org.au/get-involved/volunteering

“Be the change that you want to see in the world”

MAHATMA GANDHI

NEWSLETTER DESIGN: REBECCA STRAHAN www.petitemarguerite.com.au

RUN

MELBOURNE

RUN MELBOURNE

Sunday 15th July 2012 Help us to help other families of premature & sick babies Are you a runner or a walker?

That’s the biggest decision you have to make.

On Sunday 15th July 2012 Run Melbourne will be held once again. This year the Life’s Little Treasures Foundation will again taking part.

We’d love to smash the amount we raised last year. It’s a great community event and a fun morning for family & pets alike!

You can choose from: • Half-marathon • Australian Institute of Fitness 10km run • 5km walk or run • 3km Kids Run To get started there are a few things you need to do: 1) Register for Run Melbourne.

Go to www.runmelbourne.com.au 2) Next set up a personal fundraising page & link it to ours. Go to www.runmelbourne.everydayhero.com.au/ lifes_little_treasures_foundation_0 , then click “Join this team”. Password is “babies” It’s as simple as that – then start training!

So please consider joining us on the morning for a few fun hours.

DONATE Emily

Not yet 8 days old and already Emily has conquered battles many will never face.

In the past year over 45,000 babies were admitted into neonatal intensive care & special care units throughout Australia.

• That’s over 115 admissions every day • Over 1,300 of these babies weighed less than 1000 grams which is lighter than a bag of sugar!

Premature birth is the number one killer of newborns The Life’s Little Treasures Foundation is Australia’s leading charity whose aim is to improve the lives of premature and sick babies by providing information and assistance to their families, and by supporting research. We currently receive no government funding. We rely completely on the kind generosity and donations of individuals and organisations.

From the donations we receive, we are able to help hundreds of babies and families through the: • Provision of two world first iApps designed to assist families record information and track baby’s progress through hospital and beyond• Free distribution of our hospital survival packs for parents • Development and distribution of our parent guide and community directory designed specifically for families with babies born premature or sick • Running free support groups in the community and at hospitals • Upkeep of the 24/7 support line – 1300 MYPREMMIE (1300 69 77 36) • Development of a website that has become the premier online resource centre for both families and professionals on all things relating to babies born premature or sick.

WE NEED YOUR HELP! Emily is only one of the many babies that we have assisted; there are thousands more that are battling for their lives and need desperate help. So Please Donate Now and help us help seriously sick and premature babies and families and choose the Life’s Little Treasures Foundation for your charity donation.

There are a number of ways in which you can donate to the foundation which will assist us greatly.

Donate online at: www.lifeslittletreasures.org.au/donate/donate-online/ Or to find out what other ways you can donate go to:

www.lifeslittletreasures.org.au/donate All donations over $2 are tax deductible.

The amazing runners & walkers from 2011

Thank you for your generosity in supporting our Foundation.

Life’s Little Treasures Foundation PO Box 476, Chadstone Centre RP, Victoria ACN 143 037 834 ABN 94 232 874 269 Phone: 1300 MYPREMMIE (1300 697 736) Website: www.lifeslittletreasures.org.au Email: contact_us@lifeslittletreasures.org.au Join us on Facebook: https://www.facebook.com/lifeslittletreasuresfoundation Follow us on Twitter: http://twitter.com/#!/LifesLittle Founding member of the National Premmie Foundation.