Little Stars – Paediatric Palliative Care – Charlie's Story
80,516
Published 2015-01-06
“The death of a child is considered the worst loss you can go through and I think that’s particularly true of the families I’ve worked with,” Natasha Samy, Social Worker & Bereavement Counsellor.
This short film tells the story of Charlie and his family from Sydney, Australia.
“Charlie has GM1 gangliosidosis and that is a storage disorder that effects nerves results in Charlie being physically impaired and also cognitively impaired,” Dr John Collins.
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.
Featuring Charlie, Ali, Liz Sciberras, Dave Sciberras, Dr John Collins, Natasha Samy.
ABOUT LITTLE STARS
Stories have been captured in 9 countries – the USA, South Africa, India, Australia, Malaysia, Italy, Jordan, the UK and Russia.
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. Please sign up to the newsletter to stay tuned to project related news, including about television broadcast announcements.
www.littlestars.tv/
All Comments (21)
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That's so devastating to see your child sick. The mother is so beautiful!
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Hospice for children is amazing. Every family needs this type of care when needed
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Charlie is the most adorable little guy. Thank you for sharing your story that has touched me, someone from all they way across the world. God bless
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He’s a gorgeous baby
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Charlie is one special little man, thats for sure. Handsome little guy! I would just like to say that i wish Charlie and the family the best, and my family and i will keep you all in our thoughts and prayers. God bless, all the way from Tennessee (USA)
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I am so sorry for your family. It is so hard to watch your child when sick however, when they are as ill as your boy, it is just heart wrenching knowing you are going to lose them to death. Nothing can be said to make you feel any better but, I pray they will someday find a cure. God bless your family.
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Palliative care is the best thing to have ever happened to me. For the past year I’ve been extremely sick and nearly died twice from a very rare condition. That condition continues to cause worsening symptoms and debilitating pain. It affects every organ system. I recently after a year of doctors really not caring about the quality of my life I found palliative care. My new team is amazing and understanding and want to help me. Everyone who qualifies for palliative care and needs symptom management definitely try it out!
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Huge hug.
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God Bless you Charlie and your Family! Praying for Joy, Peace, and Comfort for you all!
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A inspiration and important story !!thank you for sharing a hard story!!
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Your family is so lucky and. He is lucky to have you all
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Special little guy is loved by all
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About five years ago I was in the hospital because of a nasty blood clot in my left foot which left me in intense pain called acute ischemic pain. I spent about a month in the hospital during which time I got my own palliative care team. They were wonderful. They had to put me on very strong pain medications which pretty much kept me sedated. However, I'd rather be sedated than screaming in pain. Doctors actually starting talking about amputating the foot. However, they first decided to start inpatient physical therapy. Thank God. All this time later, I still go out outpatient physical therapy and I also go to the gym to work out. I am walking on both feet. Unfortunately, I am still feeling the effects of that clot and there is no cure for that. Oh, well. I still have all my limbs. To make a long story short, a palliative care team is not only for people who are dying but also for people who are recovering from traumatic events. God bless Charlie and his family.
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praying for the best !!
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God bless Amen
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Such beautiful kids!
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Some of this detail should not have been discussed in front of Charlie's very young sister.
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My daughter died from GM1 Ganglisodiosis type 1 last year , I can relate the worst thing to go through 💔
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😪🙏💙
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It's been 3 years since this Video was taken so I think he has died or hes Alive. Bless you All Xx
