The Little Stars Project

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

Children’s palliative care is a response to the suffering of a child and their family facing life-threatening conditions. It’s holistic, looking at the body, mind and spirit within the social and cultural context. It cares for the child from the time of diagnosis until death, and after death it does bereavement support for the family.

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Regrettably, not all conditions can be cured. However, many children with life-limiting conditions will live for years, if not decades. Currently, 20 Million children around the world can benefit from palliative care, but access to services remains an issue (ICPCN). Children are particularly at risk of inadequate pain management due to age related factors, limited access to essential medicines and misconceptions about how to effectively treat their pain. These vulnerable children and families are suffering. They are largely invisible. But for those who are receiving care, the results are extraordinary.

These remarkable stories show young people finding hope, love, joy and attainment in the face of the inevitable.

ABOUT LITTLE STARS
Stories have been captured in 9 countries – the USA, South Africa, India, Australia, Malaysia, Italy, Jordan, the UK and Russia.

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The series is presented by acclaimed British actor David Suchet CBE.The series will compromise a one-hour feature film for television, with broadcast confirmed through Al Jazeera Documentary Channel. Additional broadcasters will be announced shortly. The project will also be broadly available through Pay TV, Video-On-Demand services including iTunes and NetFlix, DVD, iOS App and online.

Click here to discover more about the project, to sign up for alerts and to be the first to hear of the television broadcast announcements.

Videos released to date:

Little Stars Trailer
The Little Stars films tell the surprisingly life-affirming stories of young people around the world living with life-limiting illnesses. Against the odds, these children and young adults are making the most of every moment thanks to the support of their loved ones, working in harmony with passionate ‘pain and palliative care’ teams.

Why should children suffer?
Featuring Sister Frances Dominica, Barbara Gelb. Dr Rasha Al Hamad, Dr John Collins, Dr Stephen Liben, Dr Anna Gorchakova, Dr Lee Ai Chong, Joan Marston, Dr Pradnya Talawadekar, Dr Rut Kiman, Silvia Lefebvre D’Ovidio, this film asks why children with a life-limiting condition are allowed to suffer when palliative care enhances quality of life and provides expert pain and symptom control.

Value every life
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This Accolade Award-winning short film introduces us to paediatric palliative care and children’s hospice. It features Joan Marston (CEO of ICPCN) and the staff and children of Sunflower House Children’s Hospice in Bloemfontein, South Africa.

Charlie’s Story 
AustraliaThis short film tells the story of Charlie and his family from Sydney, Australia. Charlie has GM1 gangliosidosis, a storage disorder that effects nerves and results in Charlie being physically and cognitively impaired. The film describes the value of the palliative care team in supporting Charlie, his parents and his sister, Ali. The film features an interview with Dr John Collins, Head of Service: The Department of Pain Medicine and Palliative Care Service at the Children’s Hospital at Westmead (NSW Australia).

Beyond the NICU – Kali’s Story
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Kali was born prematurely at 23 weeks of gestation. As she was growing in the neonatal intensive care unit (NICU), her lungs weren’t and despite being ventilated she began gasping for every breath. In their distress, Kali’s parents accepted a referral to Dr Friedrichsdorf’s pain and palliative care team. To their surprise, the interventions of the team not only treated Kali’s pain but also facilitated dramatic improvement to the point where Kali qualified for life-saving lung transplant surgery. Importantly, Kali’s breathlessness and pain was successfully treated with morphine, an essential pain medicine.

Marmaduke’s Story
Australia
Marmaduke’s Story highlights the importance of holistic care for all members of the family when a children is diagnosed with a potentially life-limiting illnesses such as cancer. In this latest moving Little Stars movie we hear the first hand account of family members reflecting on the importance of children’s palliative care, including home-based care and effective pain control for childhood cancer patient Marmaduke from Melbourne, Australia.

Thriving with Thalassemia Major – Taabish’s Story
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Living with the effects and treatment for Thalassemia Major, a chronic condition affecting the blood, is something that Taabish has been doing since he was first diagnosed at 12 months of age. Thaabish requires a blood transfusion every 15 days, as does his sister, who was not diagnosed until she was four years old and found to be suffering from anaemia. In this latest Little Stars video, Prof Mamta Manglani, Head of Pediatrics at Sion Hospital, Mumbai, India says, “I believe it’s [about] the quality of life; it doesn’t matter how long I may live, but if I live well, I would have lived well. I believe these children also think the same way and want fun, want enjoyment, want creativity, want to live life to the fullest as much as they can. ”

Anastassia’s Story – Hope and Hyperinsulinism
Russian flagIn this latest Little Stars film we meet Anastassia Krupenrova, a young patient who was diagnosed at two weeks old with Hyperinsulinism, a life-threatening condition that causes individuals to have abnormally high levels of insulin. Under the care of palliative care doctor, Dr Ella Kumirova and her team at the Russian Children’s Palliative Care Foundation, the family feel supported and able to cope with the difficulties of raising a child with such complex needs.

Calvin’s Story
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Calvin was born premature and had complex medical needs and a life limiting illness, which is called pulmonary hypertension. His mother, Maureen, says that when she had Calvin, there was nobody to help her but was able to access the children’s palliative care services offered by Richard House Children’s Hospice in east London where both Calvin and his family access holistic care services, respite and the chance to just spend time together and enjoy themselves.

Nadia’s Story
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In Moscow, Russia we meet Nadia who lives with cerebral palsy and 5th degree retinopathy. Her mother explains that having to deal with a child with complex medical needs was ‘terrifying’and the family did not know where to turn for help. We learn throughout the film how Nadia’s family have learned to cope with her condition, the complications of managing a healthy child and a child with cerebral palsy. With the support of the Palliative Care Foundation they receive some respite and we learn about how they have been able to support the family in different ways including psychological, medical, spiritual and social services.

Matteo’s Story – Care beyond Cure
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“My name is Matteo, I am nine years old. My tracheo helps me to breath and to be well.”
Matteo was born with Ondines syndrome, which means he does not have the cerebral impulse to breathe. “When he was only a couple of months old we realized that Matteo had a serious problem; he was diagnosed with Ondine’s Syndrome… He had to be ventilated continuously … he was in the neonatal ICU….he had to undergo a tracheostomy. As a baby he was very difficult to manage,” explains Dr Benini, his palliative care doctor. “The first thing his foster mum Antonella did, regardless of his condition, was to take him into her arms and say ‘this one needs to be mine’.”

Nazmi’s story
Prospering with a genetic disorder

MALAYSIANazmi is 15 years old and lives in Malaysia. Nazmi has Spinal Muscular Atrophy (SMA) Type II so he has a progressive degeneration of his muscles. This doesn’t stop him from achieving his goals and his palliative care team are there to support him all the way.

Treating chronic pain in children
american-flagDr Stefan Friedrichsdorf tells us “Chronic pain in children is a huge problem. More than 8 million children and teenagers in the United States suffer from chronic pain bad enough, that they miss school.

“Chronic pain means that, following a thorough work up, pain remains beyond the expected time of healing. Meaning, many children may have had a minor, or even a big surgery, or an injury. They may have had an infection, and we would expect that they heal and the pain goes away, and in some of our children and teenagers, the pain just remains for days, weeks, months and years, until we see them in our clinic.”

Faith and dying – Joshua’s story
MALAYSIAThis Little Stars short movie was filmed in Kuala Lumpur, Malaysia, and features the story of a family caring for a young boy, Joshua, who suffers from MECP2 duplication syndrome. There is no curative treatment for MECP2 duplication syndrome and when he became very ill they took Joshua to the hospital where, initially, medical staff did not want to care for him in the Intensive Care Unit (ICU). After finally convincing them to admit him to ICU, he spent two months there and in the High Dependency Unit, with Yoong Teck seldom leaving his side.

Not expected to survive, Joshua’s oxygen levels did improve enough for him to be transferred to the general ward, and later discharged. This is when Hospice Malaysia stepped in and assisted the family by providing them with the holistic support they so desperately needed.

Art and Children’s Palliative Care – Lucy’s story
GermanLucy is a teenager living with her family in Munich, Germany. People say her art is exceptional, and indeed it is, not only does it look wonderful but she has the added challenge of having to hold her brush in her mouth to paint. Lucy has SMA and very limited mobility but through painting she is able to express herself and it gives her great pleasure.

Lucy and her family were introduced to palliative care five years ago and are receiving support from Kinderhospiz. This support is not just for Lucy but for the whole family. Her parents have people to talk to through the hospice that can answer their questions and concerns and offer emotional support and her little two year old sister Ruki and Lucy have access to companions.

Social support for cancer patients – Shaden’s Story
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In Amman, Jordan we meet Shaden who started chemotherapy with she was 8 years old and diagnosed with Leukemia.

“It was a hard period. The first years we were going to the hospital every day, as for Shaden the hardest thing was the hair falling out,” says Shaden’s father Suhail Abu Shbayek.

The psychological well being of palliative care patients is paramount to those working in the field. But it is not an easy road, especially when there are over 4500 new cancer patients each year in Jordan.

Benedict’s Story – Music and Children’s Palliative Care

GermanBenedikt lives in Speyer, Germany with his parents. He has a great passion for music and loves playing drums. Through his involvement with Kinderhospiz-Sterntaler he’s had opportunity to pursue his passion as the hospice provide space for him to play and have even arranged for his idol, pop star Daniele Negorni to jam with him. This wish fulfillment has been a dream come true for Benedikt and inspires him to go on playing despite his debilitating and complex heath issues. The connection as also inspired Daniele and he has now become an ambassador for Children’s Hospice.

Jessica’s Story – Children’s Palliative Care in Singapore

In Singapore we meet Jessica and her family at the Hospice. Jessica and her family moved from Indonesia to Singapore to get the medical assistance Jessica needed, including Palliative Care. Jessica’s father describes her as a very active girl who was in the choir, took ballet and piano lessons and was always busy. Then one day her health began to deteriorate and a CT scan showed a brain tumour.

Talking of the support received from the hospice in Singapore Jessica’s mother Esther says, “I felt shocked. Like I couldn’t do anything. All I could do was pray. We must pray a lot because honestly everyday being faced with this. Sometimes I’m not strong, sometimes I’m exhausted. But here I feel grateful because our friends support us and give us strength.”

Pain relief in Children’s Palliative Care – Wasswa’s story

uganda-flagIn Uganda we meet a Wasswa, a child being treated by Dr Henry Ddungu (Uganda) with oral morphine to treat his cancer pain. Wasswa’s story was filmed in Uganda while Moon Shine were making the LIFE Before Death film but felt it was important to highlight that although Little Stars is focused on how palliative care is helping many children accomplish the extraordinary in the face of serious illness, there are up to 20 million children around the world who cannot access palliative care. Many of these children can’t access even basic pain relief.

You can find out more in LIFE Before Death’s short film Pediatric Palliative Care.


Living with epilepsy – Joseph’s story

Australia‘Even though it was very confronting to have him accepted into Very Special Kids at first, or to have it acknowledged that he has a life threatening condition at first, now I feel really relieved to be hooked into a service where people really understand and I don’t just go to appointments. I’ve got a group of people around me now all the time, it’s like a safety net actually, you feel like someone’s got your back to help you, and if you’re struggling, there’s someone there. It’s really invaluable.’ Fiona Stewart.

Thank you, Joseph. Thank you, Fiona. You remind us about what’s important in life and we are so thankful for your participation in Little Stars.

Living with HIV – Naledi’s story

south-africa-flagThis Little Stars film tells the compelling story of Naledi Kopane, a young woman who, with the help of her palliative care team, has survived for 22 years despite being born HIV+ at a time in South Africa when treatment for this condition was not available. Naledi was diagnosed with HIV when she was only four years old at a time when there was no treatment and an HIV diagnosis meant that death was inevitable. Her childhood was one filled with discrimination and exclusion on account of her condition and making a difficult situation even harder for her growing up.

Despite all of these challenges, Naledi is now 22 years of age, having lived longer than anyone expected and simply takes each day as it comes. With the help and support offered to her by Sunflower Children’s Hospice she has been able to pull through any situation that has brought her down.

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  1. Pingback: Montreal conference: Palliative care is not only for the dying | Montreal Gazette

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