Matteo’s Story – Care Beyond Cure
Care Beyond Cure – Ondine’s Syndrome
“One of the things I remember when we first met Matteo was the phrase ‘we are giving you a baby who is alive’ that phrase meant everything and nothing, it meant that Matteo could die at anytime. Children born with Ondines syndrome do not have the cerebral impulse to breath.” Antonella Zamboni, Matteo’s Adoped Mother.
“The idea that these children cannot reach adulthood, from a human point of view is unacceptable. If you manage to get them to realize what the situation is, I think that no one can stop from developing palliative care in their country.” Silvia Lefebvre D’Ovidio, Maruzza Lefebvre D’Ovidio Foundation, Italy
“We all have very different cultures, resources, experiences.” Explains Dr Franca Benini, Matteo’s Palliative Care Doctor. “Therefore to be able to choose how and where to receive care throughout the illness and death I think is one of the main aspects that we must guarantee to these children and their families.”
‘Palliative care for children cannot be something that happens because there is a volunteer person who’s working in it, it should be a right, and to make sure this right is taken seriously it has to be recognized by the government.” Silvia Lefebvre D’Ovidio
“My name is Matteo, I am nine years old. My tracheo helps me to breath and to be well”
“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 “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’.”
Matteo is supported by a very dense network of healthcare workers that address his diverse needs.
“I must say that both the support of the children’s Hospice and Dr Benini’s Palliative Care team have been fundamental to us. For us as a family it was vital to have someone there. To know that there was an expert on hand round the clock to answer our question and support us.” Antonella tells us.
“The people managing these services are all professionals from the children’s hospice who all know Matteo and his family and have and excellent rapport with them.” Dr Banini.
Please consider supporting the important work of the Maruzza Foundation at Maruzza.org/en/help-us
Antonella Zamboni, Matteo’s Adoped Mother
Silvia Lefebvre D’Ovidio, Maruzza Lefebvre D’Ovidio Foundation
Dr Franca Benini, Matteo’s Palliative Care Doctor
Little Stars Trailer
Life is short, value every moment.
Little Stars is 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. Read more…
Why should children suffer?
“In all parts of the world, tragically, there are children who are going to have short lives and in many parts of the world those children are going to die in pain and with other distressing symptoms,” Sister Frances Dominica.
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). Read more…
Value Every Life
“Paediatric palliative care in its essence is a response to the suffering of a child and a family who are facing life-threatening or life-limiting 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 ” Joan Marston.
This Accolade Award-winning short film introduces us to the paediatric (pediatric) palliative care and children’s hospice. It features Joan Marston (international Children’s Palliative Care Network) and the staff and children of Sunflower House in Bloemfontein, South Africa. Read more…
Children’s Palliative Care – Charlie’s Story
“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. Read more…
Kali’s Story – Beyond The NICU
“The term palliative care often is perceived by some of my colleagues and some parents as giving up hope or working with the death-and-dying squad. What they may not understand is that clearly using palliative care means that kids actually live longer and better,” Dr Stefan Friedrichsdorf.
Kali’s Story proves that children’s palliative care can actually save lives that would have been otherwise shortened and demonstrates the importance of continuity of care throughout the lifetimes of children living with life-shortening illnesses. Read more…
Marmaduke’s Story – Childhood Cancer
“When you realize how uncertain life is , you do begin to appreciate the value or family and friendships and enjoy those moments while you have them because you don’t know what’s around the corner,” Simon Waring.
Marmaduke’s Story highlights the importance of holistic care for all members of families containing children living with potentially life-limiting illnesses. 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. Read more…
Linges’ Story – Royal Palliative Care Advocacy
“Just the sheer fact that someone as high profile as HRH Raja Zarith or HRH The Duchess of Cambridge are both serious and passionate about this movement automatically makes it a subject worth discussing.” Gail Featherstone, Wife of the Former British High Commissioner to Malaysia.
Taabish’s Story – Thriving with Thalassemia Major
Thriving with Thalassemia Major
“I believe it’s 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. ” Prof Mamta Manglani, Head of Pediatrics at Sion Hospital, Mumbai, India
Anastassia’s Story – Hope and Hyperinsulinism
Hope and Hyperinsulinism in infants
“Don’t be afraid that things like this happen, I believe that every obstacle that is given to you in life is there so you can overcome it and become stronger.” Lana Krupenrova, Anastassia’s Mother.
Little Stars – UK Hospice Going Global
This week we are pleased to be supporting the release of a short film that encourages sharing skills and knowledge of children’s palliative care internationally. This film explains what we can learn together by international linking and collaboration.
Dame Cicely Saunders had a global vision: that palliative care should become part of mainstream health care and that its principles and skills should be adapted to local settings and cultures. Read more…
Little Stars Greece Crowdfunding Campaign
Little Stars is a film project told through the voices of young people and their families. It showcases the stories of children and young people accomplishing the extraordinary in the face of serious illness. This UNIVERSAL ISSUE touches families everywhere and we’ve seen for ourselves that children’s palliative care services can be effectively delivered even in very low-resource settings.
By traveling the project to Greece to film with the incredible team at Merimna led by Danai Papadotu we hope to increase support for their services which provide such a critical support to families with children suffering life-limiting illnesses in Greece. Currently, Merimna is facing the prospect of closing one or more of it’s services due to a lack of funding. Read more…
Twinkle Twinkle Little Star – David Suchet
This short film, narrated by acclaimed British actor David Suchet CBE, communicates some of the key principles of children’s palliative care.
Regrettably, not all children are blessed with the gift of good health.
In fact, there are over twenty million children around the world who have been diagnosed with potentially life-limiting conditions.
Calvin’s Story – Children’s Hospice
“I’m so desperate for Calvin to get his independence and try to be a normal boy as much as he can,” reflects Maureen Muteesa from London, the mother of 8 year old Calvin who is living with a serious illness.
Calvin’s Story demonstrates the enormous positive impact that children’s hospice can have on the lives of children living with serious illnesses and their families.
Palliative Care & Cerebral Palsy – Nadia’s Story
Please consider supporting the important work of the Russian Children’s Palliative Care Foundation www.rcpcf.ru
In Moscow, Russia we meet Svetlana Selyukova, Nadia’s Sister “I think we have a regular sisterly relationship. She is annoying, I am annoying. So of course we have conflicts, like everybody else.” She tells us, “we live normally, you know. She’s naughty, but I think that runs in the family. She is very calm, especially if you compare her to other children, she listens and really loves to educate herself.” Read more…
Nazmi’s Story – Prospering with a Genetic Disorder
Read an update from Nazmi here
“I honestly feel that there is no need for euthanasia at all. I think it is looking at suffering and end of life care in entirely the wrong way. There are many, many solutions in suffering and euthanasia is perhaps a cop-out”. Dr Edmin Hamzah, Medical Director Hospis Malaysia
“Sometimes people just concentrate too much on the downside of things and we forget that Nazmi is doing a lot of incredible things and we should support him through that.” Dr Leeai Chong, Palliative Care Doctor.
Treating Chronic Pain in Children
“Taking pain away is not really rocket science, it’s not that difficult. If we can teach any residence, any junior doctors in one or two hours to manage 90% of children with acute pain. However most children’s hospitals have not yet implemented even the standard methods of taking acute pain away.” Dr Stefan Friedrichsdorf, Children’s Pain Expert.
In Minneapolis, USA we meet Dr Stefan Friedrichsdorf and his inter disciplinary team and learn what chronic pain in children means and how chronic pain is treated in their unique pain clinic.
Faith and Dying – Joshua’s Story
“Just never give up hope, there will always be miracle happen, I will not give up hope on him, never.” Yoong Teck Chin
In Kuala Lumpur, Malaysia we meet Yoong Teck Chin, Joshua’s mother. “When he was small he was so adorable, so chubby and so cute you know, I don’t know how to express.. but we love him so much. We came to know his biological mother when she was 8 months pregnant and at the time my husband and I were quite active in Church work. We were quite active in mission work, we thought maybe we might be able to help her. We never think of adoption of Joshua but she told me she wanted to give him away, give Joshua away.
Lucy’s Story – Art and Children’s Palliative Care
Lucy 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.
Shaden’s Story – Social Support for Cancer Patients
Shades lives with her family in Amman, Jordan. At 13 years old she has already endured years of treatment and recovery from childhood Leukemia. Through children’s palliative care she has found strength and connection with others. Shaden loves to sing and activities with the Jordan Palliative Care and Pain Management Society have given her opportunities to perform in public.
Benedikt’s Story – Music and Children’s Palliative Care
Please consider supporting the important work of Bundesverband Kinderhospiz E.V www.bundesverband-kinderhospiz.de
Benedikt 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.
“Firstly I want to tell you the story about Jessica” Hendra, Jessica’s father says. “She’s a girl who has a lot of activities, through the school she went for choir, she went for ballet, for piano, she has a lot of activity. But one day we found that her health is gradually getting not so good. In the CT scan they found there is a lump on her mid brain, ah, so that make us very, ah, down.”
Pain Relief in Children’s Palliative Care – Wasswa’s Story
In Uganda we meet a Wasswa, a child being treated by Dr Henry Ddungu (Uganda) with oral morphine to treat his cancer pain.
We filmed Wasswa in Uganda while we were making LIFE Before Death 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 can not access palliative care. Many of these children can’t access even basic pain relief.
Living with Epilepsy – Joseph’s Story
‘There is still a lot of joy to be had in life, I think there’s a tendency to look on people with disabilities or people with illnesses and focus on how they’re different or the negative. It’s only societies attitude that limits us and I just can’t believe what a joy Joseph has been for us.’ Fiona Stewart, Joseph’s mother.
Living with HIV – Naledi’s Story
In South Africa, there are over six million cases of HIV, making it the country with the biggest HIV epidemic in the world.
Naledi Kopane is one of these six million. Living in Bloemfontein, Naledi was diagnosed with HIV when she was only four years old at a time where there was no treatment: A HIV diagnosis meant that death was inevitable.
Living with Cystic Fibrosis – LeeAnne’s Story
“I was just told I have six months to two years to live. I don’t feel that way right now, and I don’t look that way.” These words from 33-year old LeeAnne explain her personality and outlook better than any others.
LeeAnne is from Boston, USA and was diagnosed with Cystic Fibrosis when she was two years old, since then her condition has worsened to the point of being inevitably terminal, but nonetheless LeeAnne is determine to persevere.