Volume 11, Issue 2 - Barth Syndrome Foundation

Barth Syndrome Trust
Letter from the Chair
By Michaela Damin, Chair, Barth Syndrome Trust (UK & Europe)
Hello everyone and a warm welcome to our new families. It was wonderful to see some of you at the last Bristol clinic
and gathering in September this year. Our family thoroughly enjoyed the whole experience. Although the actual clinic
was busy, it ran like clockwork, and we came away feeling reassured that Nick had been seen by everyone and had
all the tests he needed, without being totally exhausted. In fact, he had most of the afternoon to rest and play with his friends,
while we went to the hands-on training sessions and talks in the conference room. We adults had the opportunity to learn or
revise our resuscitation skills; there was also detailed information about the home service for G-CSF, which consists of the
supplies being regularly delivered to our homes, and a trainer who does home visits to train parents and children to do the
injections. Lastly, there was a presentation about the role of nutrition in Barth syndrome, with special emphasis on amino acid
supplementation as well as even a chance to taste arginine and cysteine in a variety of cocktails! (Note: they tasted better
than we’d expected, especially when disguised in lime or blackcurrant juice.)
The Family Gathering at Avon Valley Country Park on 1st October coincided with a very welcome heatwave, and everyone
relaxed and enjoyed the wonderful barbeque put on by Greg and Kerry-Ann Manton. There was a host of outdoor activities
for the children, so fun was had by all. We particularly enjoyed Jack’s culinary efforts to make meringue baskets for each of
us. He did a great job of loading up each meringue with fruit and cream, with a little lick of the spoon he was using for the
cream each time! Delicious!
Helen Coleman
My son is now 22 and had a
heart transplant when he was 2
years old, (before we knew about
Barth syndrome) and a renal
transplant from his Dad when he
was 13. He leads a pretty normal
life now; working and driving. I
have been married to Michael
for 31 years and we also have
a daughter, Ellie, who is now
17. I hope that by becoming a
Trustee, I will be able to share
with new and existing families the
experiences we have had over the years, and offer them hope
and support. I bring to the Trust administrative skills gained
from running our own business and current employment as a
retail manager for Champneys Forest Mere.
DATE FOR YOUR DIARY
Barth Syndrome NHS Clinic
1st — 2nd March 2012
Bristol Royal Hospital for Children
Followed by a Family Gathering on Saturday 3rd March, venue TBD
Introducing New Trustees
The Trustees are delighted to welcome two new enthusiastic members to the Board.
Suzy Green
I am Mum to Mitchell, age 5,
who has Barth syndrome. I
was a social worker before
Mitch was taken ill, and I now
keep my hand in by doing 12
hours a week. As the mother
of a young son, I can speak for
younger families on the Board.
I love fundraising and will
tackle almost anything. I hope
my enthusiasm for fundraising
can make a difference to BST.
Barth Syndrome Journal ~ Volume 11, Issue 2 Page 21