Information Regarding
Down Syndrome in Liverpool
Down Syndrome is also known as DS or Trisomy 21

Please feel free to Contact me by e-mail



First, a few details about me and my family

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.



We hope that you will find the information on this site useful to you. It has details and links to  DS groups and charities both locally and nationally and a few photos of us when we were part of a local DS charity ourselves. (We have both now retired).
We are happy, if we can, to answer any questions you may like to ask regarding DS or to provide any information or advice you may require (sorry, we don't have any leaflets etc as we are not a company or charity, just parents). Please feel free to e-mail us (see top of page) and, if we can't help, we may be able to suggest who can or, at least, point you in the right direction.
For the official, registered charity for Liverpool (DSL), please see the link below.



Newsletters

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the details given were correct (as far as was known) at the date of publication,   many of the details may now be out of date (telephone numbers etc) especially from the earlier issues.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



See and read about  local  achievements on this page. My son, Christopher, has his own web page  here


Local Charities for Down Syndrome

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.

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  South Manchester -
South Manchester Downs group 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 are two excellent forums where you can post questions and, hopefully, receive answers via e-mail. The participants are from all over the world and whatever your concern or worry, someone somewhere has already been through it.
To join the lists (no fees, they are free and many parents/carers and professionals communicate through them on a regular basis), send an e-mail in the following format:-
For the Listserve Group Click on the link and fill in the details on the page. This link is mostly from the USA
For the second, mainly from the UK, go to http://listserv.down-syndrome.net/archives/ds-uk.html Click on the link that says "Join" and then enter your details. It's as easy as that!

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..


Statementing
DS groups are often asked for help when a child with DS is going through the statementing process or when the Statement Of Special Educational Needs is being reviewed.
Here are two excellent links to pdf copies of guides to statementing which can be downloaded.
The first is from Afasic.
They are a UK charity which helps children and adults with communication difficulties (useful for the Speech Therapy) and their guide can be found on their site http://www.afasic.org.uk/pdf/Proposed%20Statement.pdf .
The second is from the Down's Syndrome association and can be found on their site at http://www.downs-syndrome.org.uk/pdfs/Statementing%20leaflet.pdf .

The Down's Syndrome Association (DSA)
The Down's Syndrome Association remains the national charity which works for the benefit of people with Down Syndrome and their families whilst the new DS charities will concentrate on their own geographic areas.
You can contact them as follows:-
DSA National Office: Langdon Down Centre, 2a Langdon Park, Teddington, TW11 9PS
Tel: 0845 230 0372 Fax: 0845 230 0372
We would strongly urge you to join the National charity as well as your local DS charity or group.

Contact National Office


Speech and Language Therapy

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.
They form a little story about miss lips and mr. Tongue and should be used as a fun routine in front of, if possible, a mirror.
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.

.


Including Children With Down's Syndrome.


 

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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Colin Hill

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Graphic by Nora Lee 


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Copyright details and disclaimer Copyright CH 2005  Any opinions expressed on this site are the personal views of the contributors and do not necessarily reflect the view of the  Webmaster and/or any charity mentioned or implied.