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Saving lives through education, advances in treatment and finding a cure for Barth syndrome

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In memory - Dragonfly Memorial Page

Dealing with loss

The death of someone you love is the hardest thing to bear and each person’s journey is different.  These pages have been written by families for families and we hope they provide a small measure of comfort as well as a signpost to resources which may help you.


You are not forgotten

One of the worst things that can happen after the loss of your precious child is that people suddenly stop talking about them. This is usually because they don’t want to cause you any further pain or because they may never have had to deal with grief before and feel uncomfortable and awkward.  


In our Dragonfly Memorial Page we celebrate the lives of our precious children and adults whose memories live on in our hearts and minds.  Our lives were enriched by their presence and we will not forget them.


Talking to someone

You may feel the need to talk to someone who knows you and who knew your child and if so, we can put you in touch with other bereaved families who know what you’re going through and who also know specifically about Barth syndrome.  Another option is to join our private Dragonfly Email forum where families can post updates in a safe and secure environment. We also hold meetings in Bristol for bereaved 'Barth families' to which you have an open invitation and the Barth Syndrome NHS Service can offer one-on-one support from their Psychologist and Nurse Specialist. Please contact us to get details.


Sometimes it can be hard to talk to the people you are closest to, for fear of “bringing them down” or because they might be dealing with their grief in a totally different way to you.  Often, at these times, it can be helpful to talk to someone who understands what you’re feeling but is not closely connected to you.  Perhaps you could contact the Child Death Helpline to talk to another bereaved parent.


Helping your other children deal with the loss of their sibling

At a time when you are experiencing your own grief at the death of a child, it can seem overwhelming to offer support to your other child or children.  Please contact us if you would like to talk through any issues you’re facing and together we can try to help.


Winston’s Wish is the leading charity in the UK for bereaved children and there are many excellent resources on their site as well as a helpline which is open from Monday-Friday.

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Memorial page

If you would like to add your story to our upcoming Dragonfly page, please contact us.

Barth Syndrome Trust graphic
Barth Syndrome Trust graphic

From: "Waterbugs and Dragonflies: Explaining Death to Young Children"
by Doris Stickney


Waterbugs and dragonflies


Down below the surface of a quiet pond lived a little colony of water bugs. They were a happy colony, living far away from the sun. For many months they were very busy, scurrying over the soft mud on the bottom of the pond. They did notice that every once in a while one of their colony seemed to lose interest in going about. Clinging to the stem of a pond lily it gradually moved out of sight and was seen no more.


Read more ...

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