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.
When he was born he was a healthy baby, we thought we just try our best to raise him, to provide whatever we can we didn’t know that he was having those, what you say life threatening illness until later that we found that he’s slow in learning so we brought him to see doctor. Doctor discribed him as a global development delay. And later on we found out that at the age
of 7 or 8 his health deteriorating, he’s beginning to have epilepsy and things like that and we try our very best to find out what the cause, what is the reason of it, so we sent his blood sample over to Australia and they found that he is actually diagnosed with MECP2 duplication syndrome.”
“There is no treatment for this kind of illness, there is no treatment at all even in overseas. When we take him to the hospital they are like just.. give up on him. I remember one time and he was very sick the doctor even refused to send him to ICU, I feel so bad when he say that but I’m glad that I have my faith. So they tried to convince me to just …just accept what he is. I never give up.”
Featuring
– Yoong Teck Chin
– JoshuaDr Ednin Hamzah
OTHER SHORTFILMS
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...
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....
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...
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...
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...
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...
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...
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...
