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Children’s Palliative Care- Guest Blog by Sue Boucher

Those of us who work in children’s palliative care all have one experience in common… seeing the sometimes surprised, sometimes sympathetic but more often the unmistakable look of shock on the faces of those who innocently ask, ‘So what work do you do?’.

 

The typical response:

 

Ohhhhh……really? That must be so hard and so depressing.”

 

I usually try to quickly intervene with something like, “It’s not at all depressing and while there are moments of great sadness, it really is a wonderful field to be in. There is much joy and satisfaction to be found in ensuring the best quality of life for very sick and vulnerable children.”

 

Most will then give you a quizzical look bordering on disbelief and before you can launch into all the wonderful things that happen in children’s palliative care the subject is quickly changed to a safer topic … like the weather! People don’t want to think about children with conditions or illnesses that threaten or will shorten their lives.

 

But every day children are born with rare genetic conditions, they get very sick and sometimes they die. Those of us working in children’s palliative care are well aware of this difficult reality as are the affected children and their families.

 

Ignoring or avoiding it won’t change anything and only makes it harder to raise awareness.

 

 

What we can change is how we choose to respond to the often complex needs of these children.  We urgently need the general public, government health officials, politicians and potential funders to realise there are so many things we all can do to reduce unnecessary suffering and make these children’s lives a great deal better.


We can provide a child with relief from pain and find ways to control the distressing symptoms of their illness, we can answer their questions with honesty and help them come to terms with their illness or condition, we can provide opportunities for them to play, to socialise and to continue to learn and we can encourage and allow them to express and help them deal with their fears and concerns as well as their hopes and desires. We can support their families as they care for their precious child and when they grieve. This is the essence of children’s palliative care. 

 

 

The series of Little Stars films and the award winning full length feature film Little Stars: Accomplishing the Extraordinary in the Face of Serious Illness capture just this: children living their lives to the fullest, supported by loved ones working together with palliative care teams. They beautifully tell the ‘surprisingly life-affirming stories’ of affected children and include interviews with those who care for them from nine separate countries in both the developed and developing world.

 

Skilfully crafted and professionally produced the films perfectly articulate what we wish we could tell people who ask about our work and who, through their tendency to avoid the topic, remain unaware of the rewarding and life-changing benefits of palliative care for children.  They also reveal that despite significant differences in models and available resources,

 

Palliative care can be provided in the richest and poorest of settings and, without exception, will improve the lives of children who have access to services and their families.


 

I have been fortunate to help organise and attend four screenings of the Little Stars feature film and have regularly used the short films when training and have witnessed first-hand the tremendous impact they have on those who watch them. The films bring home the value of palliative care provision for children in a way that is impossible to do through the spoken or written word.

 

Those who watch the films cannot help but realise that a child with a life-limiting illness not only deserves but also has the right to have their physical, social, emotional and spiritual needs met by people who have the necessary skills and knowledge to do so.

 

We are so fortunate to have such easy access to this excellent resource and I would encourage you to make the best use of them to increase awareness and advocate for training, increased access and the development of children’s palliative care services in your communities, your regions and your countries.

 

Here are a few ideas to make the most of the Little Stars films:

 

Plan to hold a screening of the full length film at your next conference

 

Hold a screening of the full length film for potential funders

 

Hold a screening of the feature film as a fund raiser

 

Use the films to educate university or college students about the value of children’s palliative care

 

Use the short films for training days or workshops

 

Embed the films on your website

 

Link to the short films from your social media sites   

 

The short films, averaging around 10 minutes in length, can be freely accessed online and the full length feature film, winner of numerous Film Festival awards and subtitled in 13 languages, can be purchased from the Little Stars website.

 

Find out more and discover all the short films at www.littlestars.tv

 

Please share this blog post and help raise awareness for children’s palliative care.

OTHER NEWS

LITTLE STARS TO BROADCAST ON TRT TURKEY

 

 

Little Stars: Accomplishing the Extraordinary in the Face of Serious Illness will be nationally broadcast in Turkey this year on TRT.

 

The Turkish Radio and Television Corporation, also known as TRT, is the national public broadcaster of Turkey.

 

Affectionately known to local consumers as the “School”, it was for many years the only television and radio provider in Turkey.

 

Read more…

Little Stars: Japan Prize Finalist

Little Stars: Accomplishing the Extraordinary in the Face of Serious Illness has been bestowed an enormous honor by being named a Finalist in the 2015 Japan Prize.

 

The Japan Prize International Contest for Educational Media is the world’s most prestigious recognition in the educational media genre. 

Read more…

Little Stars Officially Selected for Breath Of Fresh Air Festival

The Tasmanian Breath of Fresh Air Festival has officially selected Little Stars: Accomplishing the Extraordinary in the Face of Serious Illness in its 2015 Festival line-up.

 

Little Stars tells the surprisingly life-affirming stories of young people living with life-limiting illnesses. Against the odds these youngsters are making the most of every moment thanks to the support of their loved ones, working in harmony with passionate ‘palliative care’ teams. 

Read more…

Sabine Kraft guest blog: Bundesverband Kinderhospiz

Guest blog from Sabine Kraft, Bundesverband Kindehospiz, Germany.

 

Es war ein eindrückliches, unvergessliches Erlebnis, Lucy und ihre Familie an dem Filmtag zu begleiten. Lucy ist ein Mädchen, eine junge Frau, die eine starke Persönlichkeit ist, ein Mädchen, das mein Herz im Sturm erobert hat, eine Heldin. Ich wünsche Dir so sehr, Lucy, dass Deine Kunst und Deine Geschichte überall bekannt wird. Du bist ein Star! 

Read more…

Nazmi continues to chase his dream

“I continue to chase my dream of improving my chess game. I was recently chosen to attend the Level 4 Junior Master chess camp. This is the beginning of my dream to take my chess game up a level. I have also passed the first qualifying rounds for the ASEAN Para Games 2015. The games will be held in Singapore this year. I hope to be able to represent Malaysia and win a medal again.

 

Read more…

Chronic Pain In Children

Guest Blog by Dr Stefan J. Friedrichsdorf, Medical Director, Department of Pain Medicine, Children’s Hospitals and Clinics of Minnesota

 

“Your pain is real! You are not making it up – you are not crazy! But getting rid of it is hard work: First your life needs to get back to normal, then the pain goes away (and not the other way around…)”

 

Read more…

OFFICIAL SELECTION: Massachusetts Independent Film Festival

Little Stars has won Official Selection into Massachusetts Independent Film Festival.

 

The Massachusetts Independent Film Festival is a worldwide event for truly independent filmmakers. The festival has screened films from all over America, Australia, Iran, Italy, Japan and many other countries.

 

We are delighted that Little Stars will be shown in the home state of LeeAnne Curran, whose powerful story features in the film.

Read more…

Little Stars in Poland

We’re delighted to report that Little Stars has been picked up for video-on-demand in Poland by Grupa Onet.

 

Grupa Onet.pl is Poland’s leading online media company focusing on communication, information, entertainment, e-commerce, mobile and advertising. The Onet.pl brand is one the strongest and most recognizable trademarks in Poland.

 

Onet.pl is Poland’s leading portal, with over 3 billion page views and 14 million real users per month (reaching over 72% of all Polish Internet users).

 

Read more…

Life Is To Be Lived

Guest Blog: Dr Chong Lee Ai, Paediatric Palliative Care, Hospis Malaysia

 

Life is to be lived. That’s how Ahmad Nazmi keeps going.

 

Disabilities do not hinder him from dreaming. Having a life-limiting illness does not stop him from striving to achieve goals and setting new ones. His sister had the same illness and he saw her die as a teenager. She is his inspiration and his parents are his constant support.

Read more…

Together for Short Lives

Guest blog:  Lizzie Chambers.  Development Director, Together for Short Lives.

 

There are an estimated 49,000 children and young people in the UK living with a life-threatening or life-limiting condition that may require palliative care support. This number may seem small compared to the global need, but for each child and their family, the impact on their daily lives is huge.
Together for Short Lives is here to help make sure that every one of these children and young people and their families gets the best possible care whenever and wherever they need it. 

Read more…

True love against the odds – Little Stars Greece

Guest Blog by Mike Hill (Filmmaker, Little Stars)

 

After visiting 10 countries to capture stories with dozens of families about children’s palliative care you might think that it would be impossible to surprise me.

 

Not so. In Greece, I found a story – more specifically, a love story – so remarkable that it touched my heart and affected me profoundly.

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Children’s Palliative Care in Greece

Guest Blog by Danai Papadatou

 

I have been particularly impressed by the significant work being created through the project “Little Stars” which informs and promotes the value of pediatric palliative care for children with life limiting conditions and for their families. It would a unique opportunity for “Merimna” to be included in the “Little Stars” project, and be part of this international project. 

Read more…

A Little Magic Unit – Guest Blog in Russian

Guest Blog from the Russian Children’s Palliative Care Foundation

 

Дела у маленькой Насти развиваются медленно, но она делает удивительные успехи. Всего лишь полгода назад врачи говорили, что она не сможет сама есть твердую пищу, а сегодня она с удовольствием уминает ножку вареной курицы. Вся ее семья, ее прекрасная мама заботятся о ней каждую минуту. Большую поддержку оказывает им Мобильная служба паллиативной помощи детям Благотворительного фонда «Детский паллиатив»

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A Little Magic Unit

A Little Magic Unit – A guest blog from the Russian Children’s Palliative Care Foundation

 

Things are going slow with little Anastassia but she is making incredible progress – she can eat and swallow solids today though less than a year ago it was predicted impossible. Her family, her beautiful mother are with her every minute, as the Mobile Palliative Care unit of the Russian Children’s Palliative Care Foundation is there to provide support 7 days a week.

 

Read more…

Dreams are the stuff that hope is made of

Guest Blog by Ednin Hamzah, CEO/Medical Director Hospis Malaysia

 

Dreams are the stuff that hope is made of. And talking to the children that we are involved with gives us an insight into the dreams that they have. In listening to Linges as she relates her hopes and dreams, her eyes brightened as she perceives a better future despite her illness.

 

Read more…

For there is still such a lot to do

Guest Blog by Gail Featherstone

 

Gail Featherstone is the wife of the former British High Commissioner to Malaysia His Excellency Simon Featherstone CMG. Gail authored the delightful children’s book ‘Mr Monty’s Treat’ with proceeds from the sale of the book divided between Hospis Malaysia and East Anglia Children’s Hospices in the UK.

 

Read more…

Great Ormond Street Hospital Testimonial

‘Charlie’s Story’ in The Louis Dundas Centre’s, Paediatric Palliative Care Foundation Programme, Great Ormond Street Hospital

 

The Louis Dundas Centre at Great Ormond Street Hospital is a world-class centre of research, teaching and clinical practice in palliative care for children and young people.

 

Testimonial from Liz Crighton, Practice Educator Paediatric Palliative Care Foundation Programme Project, The Louis Dundas Centre

 

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Palliative Care Australia

Guest Blog by Liz Callaghan – CEO Palliative Care Australia

 

The Little Stars project shows children all over the world at their most vulnerable. Regardless of where they are, the thing that shines through in these films is the unconditional love children give and receive.

 

The films are not overly emotional in portrayal. They highlight the incredible strength of families and the way they turn adversity into a richly rewarding experience.

 

Read more…

Little Stars – A Dinosaur’s Tail

Guest Blog by Simon Waring

 

A Dinosaur’s Tail: Marmaduke at the Royal Children’s…

 

A dinosaur’s tail seems a frivolous detail to remember about my four-year old son’s Palliative Care, and yet it epitomizes the gentle approach of the Royal Children’s Hospital.

 

Read more…

GREAT ORMOND STREET – LITTLE STARS SHINES BRIGHT

Great Ormond Street Hospital in London is internationally recognized as a leading center of excellence in the care of sick children.

We were delighted to hear, shortly after the release of Charlie’s Story, that this short film from the Little Stars series will be utilized in The Louis Dundas Centre’s , Paediatric Palliative Care foundation programme.

 

“The Paediatric Palliative Care foundation programme is a new educational programme set up by The Louis Dundas Centre for Children’s Palliative Care at Great Ormond Street Hospital targeting nurses working with children with life limiting and life threatening conditions and their families. It is a two day blended programme with face to face teaching and some additional online learning content to complement the taught elements. The project team have been developing some online materials to introduce paediatric palliative care to course participants. We are particularly keen to put across the family perspective so that participants studying the course can develop some insight into what it is like to travel this journey and how support from palliative care services can influence the lives of children and their families.

 

Charlie’s story is a beautifully shot and remarkable, moving piece of film describing the journey of Charlie and his parents as they come to terms with his life limiting condition (GMI gangliosidosis) and describing the impact of professional support in their lives. By watching this short film, we hope that participants studying the course will be able to develop an understanding of the some of the joys and challenges of living with a child with a life limiting condition, and start to see the benefits of a multi-agency, holistic approach to care and support for the whole family.

 

Thank you for allowing us to share this journey with other professionals.”

 

~ Liz Crighton, Practice Educator Paediatric palliative care foundation programme project

 

Editor’s Note: Charlie’s Story showcases the essential services provided by the Palliative Care service at the Children’s Hospital at Westmead, Sydney. Please consider supporting this important work at https://support.bandagedbear.org.au/palliativecare

So much more than end-of-life care

Guest Blog by Janice Eason

 

Kali would not be here today if it would not have been for the help of her pain and palliative care team.  They have been with her since the beginning and are still a part of her life today.  The work they do is so much more than end of life care which is what I originally thought when I first met Dr. F.

 

Read more…

Hope for the Best, Prepare for the Worst

Guest Blog by Dr Stefan Friedrichsdorf

 

Pediatric Palliative Care is making sure that children facing a serious illness can live as long as possible, as well possible. While we hope for the best, we prepare for the worst.

 

Read more…

HOME BASED PALLIATIVE CARE FOR CHILDREN

Guest Blog by Dr John Collins

 

Throughout the world, the preferred location of care for children receiving palliative care is  home for the majority of the time. At times hospital and hospice care are needed, but most families desire to be at home with their children, or close to home, for as long as possible. Home is where families feel most empowered to be themselves in their ordinary routines, with a minimum of rules and regulations. Home better supports the needs of siblings in their ordinary routines to attend school, for example. Home also better supports the needs of an extended family to visit and offer support.

Read more…

CHRISTMAS BLOG

Guest Blog by Katherine Irene Pettus, PhD

 

Read in French Blog de Noël

 

Read in Russian РОЖДЕСТВЕНСКИЙ БЛОГ

 

HOW PROVIDING PALLIATIVE CARE  FOR CHILDREN WITH LIFE-LIMITING AND LIFE-THREATENING ILLNESS CALLS IN THE KINGDOM AND BENEFITS US ALL

 

When the heart breaks God can come in.  The wound is the place where the Light enters you,” Rumi.

The Christmas season calls Christians to reflect on what we call the Incarnation, or God taking human birth in a little child destined to suffer and die at the hands of those whose power he threatened. This blog reflects on how we, as community members, can serve the Incarnation in the persons of seriously ill children and their families, bringing gifts, like the Magi, of ourselves, our treasure.

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Blog de Noel

Guest Blog by Katherine Irene Pettus, PhD

Translated by Ursula Barter

 

COMMENT OFFRIR DES SOINS PALLIATIFS AUX ENFANTS DONT LES POSSIBILITES SONT LIMITÉES ET MENACÉS DANS LEUR SURVIE – C’ EST UN APPEL AU ROYAUME DONT NOUS POUVONS TOUS PROFITER

 

Lorsque le cœur s’ouvre, Dieu peut entrer – « c’est par la blessure que la lumière peut pénétrer en nous. (Rumi).

 

Le temps de Noël est un appel à tous les chrétiens de réfléchir sur ce que nous appelons l’incarnation – Dieu qui nait en petit enfant destiné à souffrir et à mourir entre les mains de ceux dont Il menaçait le pouvoir. Ce blog est une réflexion sur comment, membre de la communauté, nous pouvons être au service de l’incarnation dans des enfants gravement malades et leurs familles en leur apportant, tout comme les rois mages, les dons de nous-mêmes et nos trésors.

Read more…

РОЖДЕСТВЕНСКИЙ БЛОГ

Гостевой блог Кэтрин Ирэн Петтус, Доктор Наук

 

Read in English

 

КАК ОКАЗАНИЕ ПАЛЛИАТИВНОЙ ПОМОЩИ ДЕТЯМ СТРАДАЮЩИМ СЕРЬЕЗНЫМИ ИЛИ НЕИЗЛЕЧИМЫМИ ЗАБОЛЕВАНИЯМИ ОДАРИВАЕТ НАС ВСЕХ.
Когда сердце разбивается Бог может вступить. “Рана – это место, через которое в тебя входит свет” Руми (Джалаладдин Руми, выдающийся персидский поэт-суфий).

 

Рождество даёт нам возможность задуматься над тем, что мы называем Воплощением, или Богом рождающемся в младенце, которому суждено страдать и умереть от рук тех, чьей власти он угрожал. Этот блог о том , как мы, члены общества, можем служить Воплощению преподнося, как волхвы дары и самих себя тяжелобольным детям и их семьям.

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THE PROGRESS OF PAEDIATRIC PALLIATIVE CARE

Guest Blog by Sister Frances Dominica

 

The greatest tragedy any family can face is the death of a beloved child. It can and does happen in every part of the world, it always has and always will. The way in which society copes with such an event varies from culture to culture. Families have often felt alone in this tragedy, whether in the setting of a state of the art intensive care unit or on a pavement in a slum city.

Read more…

Little Stars burn Bright at World Cancer Congress

Article by Rob Gill for eHospice

 

The World Cancer Congress in Melbourne last night (Friday 5 December) celebrated the official Australian launch of Little Stars, the locally-produced series of films at the heart of a global advocacy project highlighting the need for greater access for children to palliative care.

Read more…

CHILDREN’S PALLIATIVE CARE IN THE UK

Guest Blog by Barbara Gelb

 

I am writing this BLOG fresh (or not so fresh!)  from a TV appearance doing a virtual cycle ride from London to Lapland for a major Christmas charity appeal here in the UK.

 

The profile of children’s palliative care has never been higher, but there is still so much more to do to reach all of the UK’s 49,000 babies, children and young people with a life-limiting condition.

Read more…

Launch of the Little Stars Project

Guest Blog from Joan Marston

 

It has been such a delight to meet up with friends and colleagues from all over the world, here in beautiful Roma but here not to spend all their time visiting the ancient and wonderful sites of this amazing city, but because they care about children with life-limiting conditions. It is a sobering thought that while we are excited to be together, to learn and to share our experiences, there are over 20 million children and families battling with the day to day challenges that such illnesses bring into their lives.

Read more…

Little Stars – Childhood Epilepsy – Joseph’s Story

We have just released Joseph’s Story as part of our Little Stars Indiegogo crowd funding campaign.

 

About Joseph’s Story by Fiona Stewart

 

“The most surprising thing I have learnt about paediatric palliative care is that it is not just about endings. Palliative care is really a steady arm to lean on: it supports you to make your time together the best it can be, and it helps families take some control back over their lives.

Read more…

DAVID SUCHET STARS IN LITTLE STARS

Thanks to the tremendous support of the first 75 Funders of the Little Stars Indiegogo Campaign we have been able to record the narration for the one-hour feature film with acclaimed, award-winning British actor David Suchet CBE (most famous for his portrayal of Agatha Christie’s Poirot).

 

THANK YOU!!!  Check out a sample of David’s performance by watching the updated campaign video now…

Read more…

LITTLE STARS INDIEGOGO CAMPAIGN – WE NEED YOU

ARTICLE COURTESY OF SUE BOUCHER @ E-HOSPICE

 

The makers of “Little Stars” the full length movie and short feature films on children’s palliative care have started a crowdfunding appeal to get them to the finish line in time for the film premiere at the World Cancer Congress in Melbourne this December.

 

Read more…

LITTLE STARS ITALY

We have spent an amazing week in Padova, Italy. Our hosts The Maruzza Foundation and Hospice Pediatrico Casa del Bambino were fantastic and enabled us to film with some incredible children and their families who are receiving support from the palliative care team at the hospice.

 

The work being done by the team at Casa del Bambino is exemplary. Currently it is the only paediatric hospice in Italy.

 

MATTEO’S STORY

Matteo is an energetic seven year old.   An extraordinary family who took him on despite his life threatening illness,

Read more…

LITTLE STARS MALAYSIA

What an amazing week we’ve just had in Malaysia filming for Little Stars!  Not only did Hospis Malaysia play fabulous hosts to us, introducing us to some of their wonderful patients in Kuala Lumpur but we also had the enormous privilege of meeting Malaysian Royalty when we traveled to Johor Bahru to film at the Pediatric Palliative Care ward in Hospital Sultan Ismail.

 

A visit by Her Royal Highness Raja Zarith Sofiah Idris, the Royal Patron of the Malaysian Paediatric Palliative Care Programme was arranged for the day of our filming.  Her Royal Highness plays an important, ongoing role in advocating for implementation and improved services for paediatic palliative care in Malaysia.  It was a pleasure to meet her and witness the joy and excitement the children on the ward had at the opportunity to meet her.

 

Read more…

Introducing LeeAnne- Little Stars USA

Introducing LeeAnne, one of the stars of our Little Stars project.  We had the great experience filming with LeeAnne in Boston last year.  LeeAnne is 34 and doing an amazing job of living with Cystic Fibrosis, a life limiting illness she was diagnosed with at age 2.  During our time with LeeAnne and her little dog Curly we gained some real insight into life with this illness and were blown away by her courage and tenacity.

 

LeeAnne lives with her fourteen year old son and husband and despite her condition she has an incredible outlook which she attributes to the support she gets from her palliative care team out of the Boston Children’s Hospital.  We look forward to sharing more of LeeAnne’s story with you in the coming months.

 

Read more…

LET’S GET THINGS STARTED – MAKE A PLEDGE

We’ve hit the ground running with funding confirmed for filming in the United States and South Africa later this year. If you haven’t had a chance to watch the first short film in the series ‘Value Every Life’ its online now and we encourage you to watch and share it with your friends and colleagues.

 

The broad project goal is – To ensure that every child needing palliative care can access it worldwide, thereby relieving the suffering of children and families facing life-limiting illness.  As part of the projects advocacy efforts designed to help reach this goal, we are inviting you to host a screening.  Please ‘Make A Pledge’ to do so and when the films are complete in 2014 we will provide you with a copy of the collection of ‘Little Stars’ films on DVD to facilitate your screening and keep for your own use.

 

Read more…

Scene 1, Take 1 – Little Stars South Africa

We’ve returned home from our first filming trip to Cape Town and Bloemfontein, South Africa.

 

It was an incredible experience to film with the children and team of Sunflower House and witness the breathtaking story of Naledi, one of the hospice’s very first patients who is now 22 years old and taking the world by storm!

 

Read more…

Hello World! www.littlestars.tv

Three cheers!  The Moonshine Movies team is delighted to be posting our first news stories on the brand new Little Stars website www.littlestars.tv!

 

Little Stars is a series of films about the surprisingly life-affirming stories of children around the world living with life-shortening illnesses.  Against the odds, these very special kids are making the most of every moment thanks to the support of their families, in harmony with passionate ‘palliative care’ teams.

 

Read more…



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