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

 

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.

 

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…