W.O.R.D.S
Issue 8
The news sheet of
the Worster-Drought Syndrome Support Group
Thank
You
"On May 12th
Andy and I attended our last committee meeting, we are both standing down from
the committee due to other commitments. Andy has been involved with the committee
from the start and myself for about 3 years, the group has come along way in
that time. Thank you to all the people we have worked with and good luck to
the committee for the future."
Karen and Andy Hink
Research
Party
Big news - the party to thank the children who took part in the research into
Worster-Drought Syndrome at the Wolfson Institute and Great Ormond Street Hospital
is being planned as I type this. We had originally hoped that SPARKS - the charity
that funded the research would organise the party, however the agreement was never
formalised, and so we have assumed responsibility. To allow time for us to prepare
adequately we have scheduled the party to take place on Sunday 19 May 2002, so
don't say we gave you too short notice.
We are holding the day at London Zoo so there should be plenty to see and do for
young and old alike. If you haven't been to London Zoo before, or even if you
have it is well worth a visit. London Zoo also features excellent conference facilities,
which we will be using to update all the parents with the findings of the research
in a morning of presentations by Dr Maria Clarke, and Katie Price and her team.
After that there will a brief presentation from the committee to update you with
our activities and seek your approval for our constitution and committee members.
We have taken on board suggestions from past events, so there will be plenty of
opportunity to meet and talk with other parents during (picnic) lunch and in the
informal afternoon enjoying the facilities of the zoo. To close the day we will
meet for afternoon tea before saying goodbye and wishing you a safe journey home.
Details of timings and our special access to London Zoo will be provided nearer
to the date of the event, however we would appreciate it if you would take the
time to complete the slip at the bottom of page 4 to help us in our planning for
your day.
To find out more about London Zoo, you can phone them on 020 7449 6260/6235 or
visit their website at www.london zoo.co.uk
London Zoo is an integral part of the Zoological Society of London, a worldwide
conservation, scientific and educational charity. Charity number 208728
Sam: Diet & Tiredness
The following has been written by Sam's mum Judith Melunsky. Please feel free
to send any comments back to us for publication in a future issue of WORDS.
"My son Sam is 11 years old and was diagnosed with WDS about 18 months ago.
We met many other children at the family day at Thames Valley Adventure Playground
and shared lots of information. One area that I am very interested in is diet
and food intolerances and I completely forgot to ask about this. Sam has been
found to have very low levels of iron previously and testing has suggested he
may be intolerant to dairy and wheat products. I would be very interested to know
if anybody has had similar problems, looked at diet and what sort of benefits
have been achieved. Tiredness is a big factor with Sam, he sleeps for 12 hours
a night and can still be tired during the day and I don't know whether his diet
could be contributing to his energy level. Any feedback would be gratefully received."
Judith Melunsky
Name and address supplied.
Committee News
All change
A lot has happened since the last newsletter, Andrew and Karen Hinks have resigned
from the committee and we have started to have an influx of new members taking
on some of the work that the committee does. Andrew has been involved with the
committee since the start, and Karen for about 3 years. During that time Andrew
took over as chair and Karen secretary. Owing to an increased workload at home
both Andrew and Karen feel that they are no longer able to give the committee
the level of support they feel it requires, although they intend to keep in
touch and take an active role in all activities we organise.
Some of you will be aware that I was chair when the committee was first formed,
and I am now acting as chair again. In my role as chair I would like to thank
Andrew and Karen for all their hard work, and wish them well in all that they
choose to do in the future.
At the last meeting of the committee (12/5/01) we were fortunate enough to be
joined by the Rumbold family, Mick and Mary, and their son Elliott. As part
of their initiation into the committee, they have produced an article about
Elliott, which appears later on in this newsletter.
It doesn't stop there - at the meeting on 14/7/01, we welcomed two new committee
members - Gavin Leech and Graham Spencer. Thankfully Gavin agreed to taking
on the role of secretary that Karen had performed so ably.
What Next
Well, those on the committee believe that it would be in the group's best interests
to become a registered charity. Their reasons for this being that it would lend
an air of legitimacy to the group and assist us when seeking funding from corporate
sources. Another reason why the transition has become more attractive is the changes
that Linda Partridge of Contact-a-Family has been working on with the Charities
Commission to produce a fast-track method by which small groups can become registered
charities. What this basically means is that if we agree to accept the standard
constitution offered by the Commission, we will avoid most of the problems encountered
when groups try to get their own constitutions accepted by the Commission. This
isn't a significant restriction as in the past we had been using a "standard"
constitution (provided by CaF) as our working document for the production of our
own constitution.
Our main stumbling points had been in trying to agree the criteria for membership
in a fair and legal way. None of us are legal experts (are you, and if so would
you like to help?) and so as you can imagine this was not a smooth process. The
terms for membership in the Charities Commission constitution require no amendment
at all. The only items we have to consider are the numbers of members who are
required in order for a committee decision to be valid.
Once we have agreed on this at committee level we can then present it to the general
membership of the support group (all of you in the UK) at an Annual General Meeting.
You will all have the chance to vote your acceptance of the constitution and the
committee in general. It will not be a lengthy process and will occupy the minimum
of your time, but it is necessary in order for us to become a charity - your help
will be appreciated.
What does this mean for those on the committee?
What this means is that there will have to be a number of trustees who will have
certain legal obligations and responsibilities, which are determined by the Charities
Commission. These changes may influence whether or not people choose to serve
on the committee, but we must bear in mind that there are many people out there
who are willing to do good work but don't want the responsibility of being a trustee.
This is catered for by the inclusion of co-opted members. These are people who
feel that they are able to offer some time or other attribute to the committee,
but don't want to have a permanent or fixed role on the committee. These people
are just as valuable as the trustees, and in many cases provide services that
the committee otherwise would not be able to offer.What this means is that there
will have to be a number of trustees who will have certain legal obligations and
responsibilities, which are determined by the Charities Commission. These changes
may influence whether or not people choose to serve on the committee, but we must
bear in mind that there are many people out there who are willing to do good work
but don't want the responsibility of being a trustee.
This is catered for by the inclusion of co-opted members. These are people who
feel that they are able to offer some time or other attribute to the committee,
but don't want to have a permanent or fixed role on the committee. These people
are just as valuable as the trustees, and in many cases provide services that
the committee otherwise would not be able to offer.
What does this mean for you?
Well, one of the changes that were agreed at the committee meeting in May was
registration for the group with the Data Protection Act (DPA). The reasons behind
this were to enable us to provide another service to you - the members. We have
a number of aims as a group, and one of them is to provide you with access to
information about the condition. So far we have been doing this as regards the
overall syndrome, but we have been unable to offer much more in the line of personal
enquiries. What we would like to do (with your help) is gather some information
from you about how Worster-Drought Syndrome affects you and your child. We don't
plan to ask a hundred questions, just a handful of questions that should take
the minimum of your time to complete. Of course this information can only be requested,
it is up to you to decide if you want to provide it or not.
What happens next depends upon how much response we get back, but we plan to put
the information into a database. The database will not be available online, no
one will have access to your information save for a few key people on the committee.
One of those people will have responsibility for maintaining this database - adding
new members to it, etc. The other will be the Vanessa - the National Contact.
She will use the information as a means of helping her when she gets requests
to link families together. At the moment Vanessa has to rely on a card index system
with minimal personal information, some of which could be out of date. She often
gets requests to put families in touch who are affected by similar problems, something
that is often extremely hard to do. When she receives these requests she writes
to families who she thinks might be an appropriate match to ask if they would
like to be put in contact with another family. As the size of the group grows
this task becomes more difficult to perform adequately, and the requirement for
a database becomes more understandable.
Over the next few months we will be looking into the restrictions imposed upon
us as a group by the DPA, and consider the best way forwards. Once we have successfully
registered we will be contacting you with the questionnaires. As well as the collection
of data regarding how WDS affects you, we will also be using the questionnaires
as a means of ensuring that we only have current contact information in our database.
If we don't receive any response from the questionnaire we will assume that we
have an incorrect address, or that you no longer wish to remain in contact with
the group. In all circumstances, we are only allowed to hold the information that
you provide to us for 1 year. After that if we have no update from you we are
obliged to remove the information.
Elliot's story
Elliot is a happy, popular although somewhat sensitive boy. At the age of 3 he
didn't have any speech, he didn't even make sounds when playing with his cars.
Around this time he had a high resolution MRI scan that showed a muddled brain
picture, or neuronal migration disorder. Basically some of the cells in his brain
formed in the wrong places. Elliot started having regular speech therapy, occupational
therapy, and physiotherapy. He has progressed in all areas. When school began
we managed to get him into a school for physically handicapped children in Bristol,
and he is still there now. He gets a lot of support from therapists that he wouldn't
necessarily get in a mainstream setting, however we do feel that he misses out
socially sometimes as most of his peers have greater physical handicaps, and can't
run around the way he can. Over the years everything has improved. Elliot walks,
runs, jumps etc. but put alongside another child his age he can look clumsy and
awkward, especially in a playground with climbing frames, open steps on slides
etc., but give him a football and he's well away! Even now though, he still comes
downstairs with one foot leading all the way. Elliot's fine motor skills improve
all the time, but slowly. He can't completely dress himself; buttons, zips, jackets,
jumpers, all prove a problem, and he hasn't got enough control to manage to write
-although he loves painting and colouring,- so at present he is having key-boarding
lessons, so that for the foreseeable future anyway he can do his written work
on a laptop computer. The greatest problems though are addressed by the speech
and language Therapist. Elliot still dribbles, and we are currently trying to
work on maintaining lip closure for between 10 to 30 seconds at a time. For over
two years now he has been able to drink from a cup without a lid, and for about
18 months he has managed to start using a straw, although this can sometimes be
hard work. Even so, when eating and drinking Elliot needs a bib, as it can be
a very messy business. He has no side-to-side movement of his tongue at all, so
he tends to put food to the side of his mouth with his fingers in order to chew
it. He used to choke, not so much on food but drinks on a daily basis, but this
hardly ever happens now. Elliot's speech and language therapist decided that the
best approach would be to give him as many ways of communicating as possible.
So Elliot uses signs that are based on English sign language, - although of course
his fingers aren't as dexterous as the average deaf signers would be. He also
uses Rebus symbols; these come from a dictionary of symbols and pictures, He has
a combination of these and words on an electronic speech aid called a 'message
mate' & he also has a mixture of the symbols and words in a book which has
different sections in it that he is familiar with, so he just locates the page/s
that he wants and points at the word/s, symbol/s. In addition to this of course,
Elliot's speech is being worked on, he is now extremely vocal, and several words
have over time become quite clear. He can make all of the vowel sounds, and he
now easily says 'K', he also says a fairly good 'G', and we are currently working
on 'M', and 'B', which he finds more difficult, but he's getting there. He also
has trouble combining sounds, so for example 'K' followed by 'EE' is kept separate
as 'K-EE'. What Elliot does do though is talk in sentences, so he will normally
attempt to say anything you ask him to repeat. He uses the correct intonation,
word order, and amount of syllables per word, it just all sounds 'vowelly'. However
if you are a familiar listener, or are maybe looking at him, it is quite clear
what he is saying.
Mick & Mary Rumbold
Your contributions
That's all for this issue of the newsletter, please feel free to write to me and
let me know what you think, your articles and stories are alway appreciated. Send
your stories to; Des Nutter, 21 Nailsea Park, Nailsea, Bristol BS48 1BA
E-mail: nutsoft@hotmail.com