Please feel free to Contact me by e-mail
I am Colin Hill, and this is my wife, Marilyn Hill with our
son, Christopher.
Between us we have many years of experience with helping to run
the DSA Liverpool Branch (now closed) and of helping to set up and run
Down Syndrome Liverpool (DSL), the local registered charity for Liverpool,
which took over from the branch, as trustees. We retired from the charity
in June 2005.
DSL publish a newsletter every three months (or thereabouts) with
up-to-date information about what's happening 
and
what's happened in their area which is sent out free of change to their
members.. Please click on a link to read their back issues up to the time
I ceased to host their website (2005).. Please note, issues prior to April
2003 were published as DSA branch newsletters and that branch has closed.
Please also note that as these are archives and, although the details
given were correct (as far as was known) at the date of publication,
many of the details may now be out of date (telephone numbers etc) especially
from the earlier issues. The same applies to offices held, charity details
and organisations. Please check first before attempting to contact any
person or organisation. There are many articles that may be of use to you,
which is why the archives exist. Please feel free to read through them.
The archives I hold are only from February 2002 to May 2005 (they
were not kept on file prior to that).
Please click on the issue you would like to read.
Read their February 2002 Newsletter Read
their May 2002 Newsletter
Read their August 2002 Newsletter
Read their October 2002 Newsletter Read
their January 2003 Newsletter
Read their April 2003 Newsletter
Read their July 2003 Newsletter Read
their October 2003 Newsletter Read
their January 2004 Newsletter
Read
their April 2004 Newsletter Read
their July 2004 Newsletter Read
their January 2005 Newsletter
Read
their May 2005 Newsletter
Down Syndrome
Liverpool is the local, registered charity run by a group of hard-working,
unpaid volunteers who provide help and support for children and adults
with Down Syndrome, their families, carers, professionals and all those
interested in matters concerning Down Syndrome in the Liverpool area.
You can find them at www.downsyndromeliverpool.org.uk .
Please do visit their site
As well as providing advice and support, they have had a sponsorship
program running to fund professionals to attend the Sarah
Duffen Centre in Portsmouth and other venues for training and still
have a local training program for professionals, assistants and those who
work with children with DS in Liverpool. Details will appear on their site.
At the request of the Down's Syndrome Association National Office,
the previous network of DSA branches have now become independent charities
or groups in their own right with their own charity numbers (where applicable).
The Liverpool Branch became "Down Syndrome Liverpool" (DSL). They still
retain the links with DSA National Office through affiliation and are a
registered charity. You can check their registration on the site
http://www.charity-commission.gov.uk/
If you would like to help them (bearing in mind that their work is
in Liverpool) with their general funding, donations of any amount would,
I am sure, be gratefully received. Cheques should be made out to "Down
Syndrome Liverpool" (please don't send cash) and sent to "Down Syndrome
Liverpool, PO Box 1, Mossley Hill DO, Liverpool L18 4SD (I suggest you
do check their site first to confirm that the address is still valid before
posting). Donations are their only source of funding for their vital work
in Liverpool.
You will I am sure, receive a letter of thanks, an entry in their
newsletter and their gratitude.
Most, if not all, similar groups are always seeking funding. If you
wish to help in your particular area, please see the link below regarding
a comprehensive listing of similar groups with contact details or contact
the DSA to help on a nationwide basis (link further down the page).
The DSA hold a full list of local DS charities who are affiliated
or are known to them and can provide you with contact details. See
http://www.dsa-uk.com/DSA_ContactUs.aspx
for a map of known groups.
Close to Liverpool (across the River Mersey) is the area of Cheshire
known as the Wirral.
There is a group there called Sundowns who have the site www.sundowns.org.uk
Further afield but still in the North West, there is also another
local group covering Greater
Manchester
(although I believe they are not active at present) but the Manchester
Downs group is and Calderdale is covered by www.calderdaledsa.org.
There is also a group covering Lancashire (rather than the individual
cities) called Lancashire Down's
Syndrome Support Group and they have something rather special.
A moderated forum. If you live in Lancashire, why not drop in for a chat?
For a comprehensive listing of resources
available in the UK, Click
Here.
It
is known that about 40% of children born with Down Syndrome have some form
of heart problem. There is a support group, The
Down's Heart Group that you can contact for more details.
There is also a new website concentrating on Mosaic Down Syndrome - MDS -(where not all the body's cells carry the extra chromosome). As this is a fairly rare genetic condition, there tends not to be much information available locally and this new web site aims to bring people together via cyberspace to chat and discuss MDS and obtain e-mail support. The site is based in Blackpool, Lancashire UK but, thanks to the web, can reach far beyond their geographic confines. You can find them at http://www.mosaicdownsyndrome.org
On the subject of health, one should also be aware of the increased
risk of thyroid problems and, less known, gluten intolerance (known as
coeliac or celiac disease) and the need for regular testing. Ask your GP
or health professional for more details. These and other health issues
(together with many more issues) are regularly discussed on the Listserve
news group mentioned above. Needless to say, I am a regular poster (some
may say too regular) there myself.
There is also a site called "Down Syndrome International Swimming
Organisation" which those of you with budding swimmers may like to take
a look at. There is a great page there under "news" (click the button under
the Union flag) which shows the UK competitors in the last Special
Olympics Swimming team. You can reach the site by clicking here
.
A word of caution if you are a little "touchy" over terminology
as there are many references to "Down Syndrome swimmers", "Down's
People" and the like, which many parents and people with DS object to these
days, preferring the "people first" rule as in "swimmers with Down Syndrome"
etc..
Statement
Of Special Educational Needs is being reviewed.
Speech and language therapy is always a talking point with DS and
many parents want to do as much for their children as possible.
There are exercises (given to us by a qualified speech and language
therapist) which can help at any age.
They can help tone the muscles of the tongue and lips to (for the
very young) in preparation for speech, and to help strengthen and tone
these muscles for the older child to help promote clearer speech.
You can find them at this
location. . Please feel free to download them (right click, "save
picture" or whichever way your browser works). They are quite large files
as they will reproduce well to A4 size). Please be patient while the page
loads, it's quite large).
If you like, you can download the zip files here
and here (I presume you have WinZip or similar
to open them).
I hope these are of help to you. They were to us.
Now, some photos of us.
The Transmission Hourly Group at the Ford's Halewood Plant
making a magnificent donation of £500.
This photograph shows Marilyn Hill receiving the cheque on
behalf of the local DS charity when she was the secretary .
This picture
shows Marilyn Hill (centre) being presented with a cheque for £300
by Jim Makin of MANWEB. The money was raised from their Safety and Environment
Department and was presented to the old DSA Liverpool Branch (now closed).
This
photo shows us together with some supporters and former DSA committee members
at the Podium in Liverpool City Centre collecting funds for the DSA National
Office during
the first "Tea Party" collection.
.
A local DS charity, due to successful fund raising, were able
to donate the full costs to the DSA National Office for a further reprinting
of these invaluable booklets.
The photograph shows my son, Chris Hill and Shauna Hogan with
the cheque.
We are Christians and have had a kind offer of support from Rev Wayne
Clarke, the minister of our church
Dovedale Baptist Church
Dovedale Road, Liverpool. (Near to Penny Lane)
If any of you would like prayers said for you, members of your family
or if you have any specific prayer requests, please click on the "contact
me" link at the top of the page and send me an e-mail and this will be
passed on or you can contact them directly by clicking on the link to the
church website.
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