10 FebRemembering some of our brave heart warriors

During CHD awareness month, we are re-sharing some of our brave Butterflies’ stories who left this world too soon. Although these brave “heart” babies are no longer with us, they are never forgotten about. For us, the most important thing is always remembering these children and continuing to share their stories. Their lives matter.


“At Butterfly Home, we will remember Emmanuel as a handsome, precious little boy. We are glad he had some fun in this place, glad that he was loved and glad that we smiled with him. And we are glad too, that we gave him the chance at healing, even though the result was not as we hoped. Without surgery, his life expectancy was very short, and survival was impossible. Emmanuel was worth more than that – he was worthy of a chance.”


“We knew Derek’s heart condition was severe, but were encouraged by the wise counsel of his specialist team. And his initial response to the first surgery had given us a great deal of hope. We looked at Derek and we could picture him growing into an active, adventurous boy.

But mending people is not like mending machines. You can’t follow a blue-print and know that things will always work out fine. People are all so unique, and sometimes even the experts cannot predict what will happen next. As time went by, we began to see a worrying deterioration in Derek’s condition. Instead of continuing to improve, he was showing more signs of heart failure. We were guided by his specialists, and plans were stepped up to bring his second surgery forward.

Then, to our deep sorrow, Derek suffered a cardiac crisis before travelling. The local doctors did their best to help save his life, but his situation was very complex. Derek’s fight was over, and our hearts were broken.

And yet …. as our tears fall, we still see much that is good in Derek’s story. We are deeply grateful that he had a chance – the same chance every child in this world deserves. Derek was never turned away because he was too poor, too insignificant or too orphaned. Compassionate doctors, generous supporters, and loving volunteers made sure that he had the same treatment offered to the children of financially secure parents. His life was valued, he touched many people, and he was never cast away.”


Greig broke many hearts in our home and around the world. We had so much hope that his story was going to have a different ending.

“His doctors worked hard for this little boy – his life was valued and they battled determinedly by his side. State of the art medical facilities were available. This little boy was not abandoned or discarded – he was treasured and his life was important.

But even in our sadness, we are thankful that choices were made to give Greig a chance. His chances without surgery were exactly zero. He could not survive, and would have lived a life reduced in both length and quality. He was suffering already – things would only have gotten worse. This surgery meant that a full life was a real possibility for Greig.”

Emmanuel, Derek and Greig you are still so loved after all these years. Your pictures are still on our wall and we will always remember you. You are all forever missed.



Butterfly Children’s Hospices wouldn’t be able to do the work it does without your support. Please consider donating to help this invaluable cause to continue changing lives.

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