Down's Syndrome Awareness Week 6-12 June

[Thomcat]

Down's Syndrome Awareness Week
6 to 12 June 2005

So I'm starting early and maiking you all aware.

For further information about Down?s Syndrome Awareness Week, to take part in creating awareness contact Amy Darlington, Communications Officer, Down?s Syndrome Association
T: 0845 230 0372 E: [email protected]


In 2005, the campaign will focus on celebrating adults with Down's syndrome.

Down's syndrome?

Down's syndrome describes a collection of signs or characteristics that occur as a result of a person inheriting an extra copy of one chromosome.

Two babies are born with Down's syndrome every day in the UK. Life expectancy of those born with Down's is now up to 60 or 70 years old.

Down's syndrome is not an illness and that people with the condition shouldn't be described or thought of as sufferers.


Down's syndrome isn't a disease; it's a genetic condition that occurs when an extra chromosome 21 is present. Chromosomes are tiny particles that carry the blueprint for all the characteristics we inherit, and are contained within cells. There are normally 46 chromosomes in each cell (23 pairs, numbered 1 to 23) - half inherited from our mother and half from our father. A person born with Down's will have 47 chromosomes.

This extra chromosome may originate from the mother or father and is present because of a genetic accident when the egg or the sperm is made, or during initial cell division following conception.

Babies born with Down's syndrome can learn to do everything other babies can, it just takes more time. There are various programmes that can help a child's development, including physiotherapy, occupational therapy and speech therapy.

Provided they are given the right support and opportunities to develop their skills and independence, people with Down's syndrome can thrive and lead an ordinary life - in school, in further education, in work, living independently in a home of their own and finding a fulfilling relationship.

[Thomcat]

One thing you could all do is to buy a copy of 'Songs for my Sister' by Zoe Mace. Zoe is being hailed as the next Charlotte church. Zoe's sister has Down's syndrome. Proceeds are going to the DSA. Album is out on 6 June and is available from all good stockists.

[Ellbell]

TC
Feel quite sad reading this. I had a 2nd cousin (my dad's cousin) who had DS and spina bifida. When I read this, I realise what a crappy time he had. He'd have been born in the late 1930s and basically his parents were ashamed of him. No-one, bar a few close family members (probably half a dozen people - didn't help that my aunt was quite 'difficult' and fell out with most of her family!) and members of the medical profession, was ever allowed to see him. If anyone else went to her house he'd be shut in the kitchen. This was his life for over 60 years. At one point, when my aunt was ill in hospital, my parents arranged for him to go to a residential home for adults with learning difficulties for a while. He LOVED it. But because he'd never mixed with anyone, he got really ill and my aunt accused my parents of trying to kill him and refused to let him leave the house again. Makes me feel very sad.
Anyway, I for one will be happy to celebrate the achievements of adults with DS next week. Thanks for telling us about this TC.

[Dingle]

Feeling rather quilty now! I did an article for our local newspaper last year, but have done absolutely nothing this year!!

Still pondering over whether or not to try to do the Flora Light again. TBH I was quite dissapointed in the publicity the DSA had last year, cost me about £70 for the day and didn't even get so much as a balloon from the DSA stand. The only consolation was that I did raise over £1300. I know there were about 200 women taking part last year, but you may as well have been running on your own.

[HappyDaddy]

Is this something that needs funds? I ask because I thought Down's was something already established on the government's radar.

[lou33]

charities always need funds

[potty1]

It's not just about funds, it's about raising awareness and changing attitudes.

[HappyDaddy]

That's what I meant Lou, I didn't realise that down's was so marginalised that it needed charities.

I also thought that down's was so well researched that it was almost mainstream, in it's support.

[Dingle]

I feel that fundraising and raising awareness pretty much goes hand in hand. BUT the main issue is to make more people aware of DS and hopefully lessen the ignorance surrounded by the "disability!" IYSWIM.

[HappyDaddy]

I didn't realise there was much ignorance, anymore.

[eidsvold]

HappyDaddy - there are still a lot of 'outdated' attitudes that exist regarding Down syndrome - some doctors in the not so distant past were still telling parents to give up their children or that they will never learn to live independantly etc. Lots of discrimination still exists regarding this situation.

DSA does a lot to promote the positive of DS and to help break down ignorance BUT I think itsmost important job is the information and support it provides parents, educators, medical professionals etc. LIke all support groups the govt provides very little of their funds. I can't remember how little but I remember being surprised when I found out.

They are still researching HappyDaddy - recently they supported a research project that looked at the impact of vitamins and minerals on young children. Our dd1 was invited to take part - think the research findings are due to be posted. They were looking into the impact of certain vitamins and minerals on their health, development etc. The DSA also supports ongoing research that looks into Alzheimers etc in older people with DS.

Our DSA week is not until October.

Dingle - I felt the same way the one time I did the Flora Light. I was doing it by myself as I felt it was important - but there were a few mums who I asked if I could walk with them and their reply was downright rude and nasty - make a person feel welcome. I figured I was doing it to help kids like my dd1 not to worry about old cows like them!!.

[coppertop]

It sometimes feels as though the only time DS gets mentioned is in terms of antenatal testing. More awareness of what happens postnatally and in later life could do so much to change the attitudes of a lot of people. If it weren't for the SN board I would know very very little about DS.

[eidsvold]

HappyDaddy - we knew our dd1 would have ds before she was born and the no of people that are shocked when that info sinks in - we chose to continue the pregnancy and have dd1.... in fact the year my dd1 was born - in the UK more babies with ds were aborted than were born.......

[kli3]

ive just read the posts on this site, and i am amazed on what people think of ds unless they have had a ds or had contact with them how can people critisize they must be that callous, i am new to this, i had a baby boy a year ago born with downs syndrome he is the most loving and affectionate child ever, there isnt a day that goes by that he doesnt make me smile or laugh he is a pleasure to have, i just have one concern and wonder if anyone could help, my son is very fussy about who feeds him at present he will only let myself,my husband, or my 8yr old daughter feed him and i would love for my mum to be able to feed him so that i could just spend a few hours pampering myself is there any advice you could give me on how to resolve this .

yours faithfully

kerry illsley

[Thomcat]

Happydaddy, while people still say to me 'oh poor you' and 'ohh I saw a Down's the other day and she waved and everything', there is still educating to do.

The DSA need funds to help to continue to support families who have just had a child with DS and need some suport and advice, to help and support young adults. Here's where the money goes:

£1
The cost of producing and issuing booklets or factsheets providing callers with vital information to allay needless fears

£5
All it takes to provide up to 30 minutes of telephone support, counselling or advice to anyone with questions or concerns

£25
Providing an hour of face to face support to a parent from one of our trained Information Officers on any aspect of living with Down's syndrome

£50
Specialist support from our Education Officer or Welfare Benefits Adviser offering clear, helpful guidance through the regularatory mazes

£100
A regional development officer can visit a key group of healthcare professionals (hospital midwives, health workers) to help them understand the latest in best practice

£250
Organising and facilitating a meeting of young adults with Down's syndrome anywhere in the UK to provide the chance for them to discuss issues and make decisions for themselves

£1,000
Producing and distributing 500 copies of our newsletter for members, giving the latest news on all issues relating to Down's syndrome

£5,000
The cost of drafting and printing a new information leaflet (adding to our existing range of 25 publications) on a further crucial aspect of living with Down's syndrome

£10,000
What it takes to maintain our Helpline services for one month

[Dingle]

When Amelia was born we pretty much came out of hospital and we were on our own. HVs, with no disrespect, had no experience of the problems or feeding issues I was facing.

I tried to chase up the DSA as I was awaiting a local contact number, so that I was able to meet up with other parents who had been in my position. There was no group local to me!

nearly 2 years later, I heard, by chance, that there was going to be a meeting held by a RDO from the DSA to establish the interest locally in setting up a group. We now have a small but regular group established.

Despite this the DSA has pulled funding to keep our RDOs position open. So once again we are on our own. Luckily though- we have now set up an affiliated group and are having to raise our own funding from September.

Sorry, I know this is going off at tangents, but it is something close to my heart. I have been chatting to our RDO for well over an hour this morning. We have just become established, building up a great little, very supportive group, only to have it axed due to lack of funding.

[geekgrrl]

dingle we had an equally unhappy experience with the DSA at first - I sent off all the membership forms, making clear that our baby with DS had only just been born and that I would like someone locally to contact me - it took them 18 months.

HappyDaddy - I don't even know where to start. No, most people don't have a clue about DS, including paediatricians, GPs, HVs... And certainly not most of the general public. And the support required for inclusion generally has to be fought for with expert knowledge of how to work the system.

Thomcat, have you got the latest journal yet - Zoe's Mace's little sister sadly died in March following heart surgery. So so sad.

[Dingle]

TBH I really only think you realise exactly how ignorant society is when you live with a disability in your life, day in - day out.

I know everyone is entitled to their own opinion, and that everyone wants different things for their children. But was talking about a mum of a 5 month old baby with DS. The mum had already made her mind up that she wanted her daughter to attend a SN school!!! Why not write you child off from birth- they don't deserve a chance at life, they have DS!!!!

Sorry, but it makes me so angry. If a mum can say that of her 5 month old baby, then what chance does the likes of Amelia stand in the big bad world.

I am not saying that Amelia won't attend a SN school when the time comes. But we at least will aim for mainstream and worry about it if it doesn't work out....

Sorry...rant....rant....ramble...ramble..

[Thomcat]

I did hear that geekgrrl yes, very, very sad, poor little might, she had such a poorly heart