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CdLS children and adults at the Stratford
meeting with Dr Emma Tonkin |
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Some 24 CdLS people and their families turned up
at Stratford Moat House for the family weekend in
May.
As well as getting the breaking news of the
discovery of the CdLS gene from Dr Emma Tonkin,
the families also got a chance to swim in the
hotel’s excellent pool, tour the historic
town and meet other families at a private disco.
A number of CdLS professionals were in attendance.
Professor Chris Oliver and his team were in great
demand for one-to-one discussions about behaviour
issues and consultant paediatric gastroenterologist
Peter Gillet drove down from Edinburgh to talk
to parents and meet children with reflux and other
GI problems.
Dr Peter Hammond from London University arrived
on Saturday evening and fascinated families with
his 3D cameras that will eventually be used to
identify people with CdLS by using data collected
from the pictures. He is hoping to attend other
events to capture even more data. (Parents get
to receive a CD containing the 3D computerised
image of their child.)
“What was interesting was the age ranges
of the different CdLS people there,” said
chairman Alan Peaford. “We had newborn babies,
through to people in their late thirties. There
were a lot of new friendships developed and it
really made it worthwhile to see families sharing
ideas.”
New families Several families were on their
first ever visit to a CdLS event. Paul Barlow
from Northern Ireland was one of those. “I
was very nervous about coming in, but it was great
to meet so many people and talk to doctors who
understood about CdLS.”
Paul’s 10-month-old daughter Amy was back
in Northern Ireland in hospital where she had
just been diagnosed with CdLS. “I am just
so glad I came. I was constantly on the phone
to my wife Pamela to tell her what was happening.
I look forward to us all being able to come to
another event in the future,” he said. |
