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.
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.
Guest Blog by Ednin Hamzah, CEO/Medical Director Hospis Malaysia
Dreams are the stuff that hope is made of. And talking to the children that we are involved with gives us an insight into the dreams that they have. In listening to Linges as she relates her hopes and dreams, her eyes brightened as she perceives a better future despite her illness.
Guest Blog by Gail Featherstone
Gail Featherstone is the wife of the former British High Commissioner to Malaysia His Excellency Simon Featherstone CMG. Gail authored the delightful children’s book ‘Mr Monty’s Treat’ with proceeds from the sale of the book divided between Hospis Malaysia and East Anglia Children’s Hospices in the UK.
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