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Welcome to our first
Newsletter!
To launch the first
newsletter of the Moebius Research Trust we thought you
might like to learn a little about us.
There are four Trustees,
Myself and Colin Read (my husband) and another couple, Kelly
and Steev Hole.
 Our
family consists of Kathryn (16), Alexandria (14)George (5)
and Erin (3) and Berg the dog! George was diagnosed with
Moebius at 5 days old, so although traumatic at the time, it
has actually been a bit easier knowing roughly what we were
dealing with. Although I have to say, we were told that
George was most probably Blind, Deaf, had deformed hands and
shoulders, paralysed face, dislocated hips and a clef
palate! Now out of that he actually has partial facial
paralysis, no lateral eye movement and can't blink.....
doctors don't know everything eh!! We were also told that
he'd probably need to go to special needs school - well he
started a 'normal' primary school in August 2007 and he's
already reading and writing. George also enjoys Drama and
Karate. He's a fantastic little boy and if it hadn't been
for him we would never have sought out Kelly and Steev and
started up the Research Trust together.
Although our aim is to find out what causes Moebius, we also
hope that by bringing everyone together that we can all help
and support each other. There's not a lot known about
Moebius and even fewer people treating it so if we can all
pull our resources together I know we'll all be a lot
stronger.
Dionne & Colin
A life without a smile
Before our second son was born we had
never contemplated what life would be like without the ability to
smile or express yourself through facial communication. The
diagnosis of Moebius syndrome has made us face this reality.
Our 9 month old son, Isaac, has no idea
that he is a rarity or that he cannot smile. He laughs at his
brother, he giggles at jokes only he understands and yet only me and
his father can see that very small movement in his lips that tell us
he is smiling. To others he is a bit unresponsive or they just
see his winky wonky eyes.
At a time when we should be relaxing and
enjoying the development of our baby son we are searching for
specialists who understand his conditon or looking for ways to make
his future a bit easier. It is for this reason why my family
is happy to support the Moebius Research Trust and why I am happy to
write this newsletter. If by publicising this condition we can
generate sufficient interest and raise awareness perhaps we can find
the reason that this syndrome exists and stop other individuals
having to face a life without a smile.
If you would like to contribute articles
to this newsletter or have any other comments on it please contact
me, Ceri Hughes by clicking
here.
Why conduct this
research?
Working closely with Dr Wayne Lam, a
Geneticist based at the Western General Hospital in Edinburgh, we
aim to determine the underlying genetic cause and to identify the
neurodevelopmental processes involved in the development of Moebius
syndrome.
Since its identification very little progress has been made in the
understanding of how the abnormalities arise. Any research has to be
conducted at several levels.
To read more about what the research
will entail and why we have chosen to work with Dr Lam please click
here to see a more detailed article.
Fundraising Latest
Are you or do you know of someone prepared to run
the Edinburgh Marathon on behalf of the Moebius Trust. It is
to be held on Sunday 25th May 2008
in Edinburgh.
We have been told to suggest that each runner pledges to raise a
minimum of £500 (as we have to pay £125+vat per person). If
you would like further information please contact us by clicking
here.
To reach the £250,000 target we need to encourage
as many people as possible to raise funds on behalf of this
worthwhile cause. With such a rare syndrome it is not easy as
very few people are touched by this syndrome. If you have any
ideas or would like more information on how to donate please visit
the Moebius Research Trust website or contact us by clicking
here.
Does your employer have a Charity of the Year - why not nominate us?
Nominating Moebius Research
Trust for your Charity of the Year would be a great way to get the
company to work together whilst helping the charity to achieve its
aims of funding groundbreaking research.
We would be happy to support youir
business in any way that we can tomake the most of the partnership.
Click
here to contact us.
Q & A
Each edition we will try to feature your
questions and find an answer to help. Please click
here to send us your
question.
My baby son has problems
sucking and I have been told a Haberman feeder might help.
What is it and where can I get one?
The Haberman Feeder was
invented by a mother who experienced the misery of
feeding problems after her daughter was born with a rare
syndrome, and was designed to help babies who have a
condition that makes feeding difficult.
The Haberman Feeder
concentrates the baby's sucking effort directly onto the
milk in the teat so that even the weakest suck gets
results and gives the baby complete control. Air
swallowing is reduced, and babies with feeding
difficulties and/or a cleft palate can benefit
significantly. The parent can help the baby by gently
squeezing and releasing the teat to control the amount
of milk that flows into the baby's mouth.
The Haberman Feeder
can be bought from many online retailers and specialist
shops.
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Edition 1,
February/March 2008
Your story!
Want to share your story
about Moebius Syndrome? Have you any tips to share or success
stories. Please click
here and send us your story or
comments.
What do we know about Moebius
Syndrome?
Moebius Syndrome is a rare
congenital disorder which sadly to date has no cure. We believe
there are only around 200 cases in the UK, so not many people have
heard of this condition.
The main features of Moebius are determined by the absence of the
6th and 7th cranial nerves, which control facial expression. These
nerves allow us to blink and move the eyes laterally and give us the
ability to smile.
Other nerves and muscles can also be affected by the condition.
The vast majority of cases are sporadic, however, there are reported
cases of familial inheritance suggesting a possible genetic basis to
this syndrome. Without further research the cause, however,
will remain unknown.
Have you read?
In this section we will
highlight books of interest. If you have any suggestions
please click
here.
Looking for ways to
introduce the subject of Moebius to children why not read them
'Albert Le Blanc' by Nick Butterworth.
An uplitfting story about
a bear without a smile A very sad-looking French bear has arrived in
the toy shop. His name is Albert le Blanc. The other toys plan a
special show to cheer him up. Albert keeps trying to tell the toys
he's not sad -- he just has a sad face -- but they are too busy with
their show...Jack-in-a-box leaps around, Pickle the mouse tries to
tell a joke (but forgets the ending) and Sally the hippo puts on her
bright red lipstick and performs a ballet. But, Sally's ballet moves
aren't quite as graceful as intended and she falls on top of Albert,
planting a big kiss right on his mouth. And when Albert gets up
again he has a huge red lipstick grin all over his face. Everyone
laughs and laughs...especially Albert le Blanc!
Want to chat?
If you would like to chat with others
who have an interest in Moebius Syndrome, the Moebius Research Trust
forum is a great place to visit.
You can look at the forum by clicking
here and to post your comments
simply complete the registration form and you will be given access
to the site.
Directory of Specialists
For those amongst us who are trying to
find specialist advice regarding Moebius, we are often met by
uncertainty and lack of knowledge. Due to the rarity of this
syndrome many consultants and health professionals have not come
across this syndrome. In order to make it easier to find an
adviser we are trying to build a database of specialists that exist
within each region.
If you are a health professional with
experience of Moebius or can add to this database from your own
experience please click
here and share your knowledge.
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