Hi, I think anytime soon would be a good idea to contact media/ local national to run stories/ interviews with families with children with Downs, what does everyone else think? It is June but would need to be done well ahead.
Post by sarahncharlimai on Apr 29, 2007 22:26:31 GMT
yes i think thats a great idea obviously looking at that site earlier there is to much ignorance and not enough positivity about what a blessing it is to have a child with ds. It would be a good way of promoting this site too x x
What did you put in your email, it might give me some ideas what to put in mine for my paper.
Also last year some time GMTV had a little boy on, i think he was 3, had very dark hair and was ace! he was running round the studio playing, going up to someone in the back who think was dressed as a statue. He was so normal and gave a great positive message for Downs, that if i had seen him when i was pgnt it would have helped me. I think it would be good if somehow we could get that family back on! Does anyone remember him?
Post by sarahncharlimai on Apr 29, 2007 23:12:30 GMT
Yes i remember seeing him i cant remember what his name was or where he comes from has i only caught a glimpse, I just wrote that i would be very grateful if they would run an article about the positive effects of having a child with ds and that ther is to much negativity about i also put that this site is so good and that it could help so many other people like ourselfs out there if they knew about it. The only thing is i am not very good with expressing myself, i know what i want to say but find it hard to find the words if you know what i mean, thats why my posts are mostly short lol, except this one ha ha, i also wrote to chat. Did you see that article last year (think it was last year) about Hannah? that was beautiful her mums name is jo
Yeah I think that would be a good idea. Was Downs Awareness week for last year the 5th to 11th june? I'm sure I've read that somewhere , only George was due on the 5th of June and actuall born on the 11th, might contact our local paper if those dates are right as its such a coincidence x
right, i have e-mailed 3 places, if i put down the e-mail addresses that i have contacted and if everyone who is interested can e-mail the same ones and do the same heading for a subject then i am sure that someone will take notice.....
if you need an idea on what to put, the e-mail i have sent is
my name is Daniella, i am 23 and i am married to Adam, 28, we have a son who has just turned 18 months and his name is Joshua, he has downs syndrome and i am constantly trying to raise awareness of downs syndrome below is my story
In June 2006, i was aproximately 14 weeks pregnant, i had the barts tests as i saw it as a standard thing for all pregnant women even though i knew it was optional.
A week later we had a phone call saying that the hospital would like to see Adam and myself asap as something had come up on the tests, the way we were told was that it wasnt too much to worry about but it didnt stop me from calling adam in tears and panic telling him to come home from work. When we got to the hospital we were told that we had a 1 in 130 chance of having a baby with downs and that we could have the amnio but there was a 1 in 100 chance of miscarriage after the amnio. In our eyes it was more likely we would miscarry so we decided against the amnio. we carried on throughout the pregnancy with a 'what if' hanging over our heads. Even though we had more scans than normal no problems showed up.
On the 4th November 2005 we had our precious little boy. The day he was born i was looking at him and i saw soft markers which i mentioned to the midwife, who got the head midwife, who then arranged the neccesary tests. As it was a Friday we had to wait all weekend for the results and we had to stay in hospital until we had the results. It was the longest weekend of our lives.
Monday came and we waited quite a while before the consultant came to see us, we were told and then left with the news that our son has downs and we were promised some information about downs, which we had to wait a further 24 hours for. We were in hospital a week in total because of the relevant tests on joshua's heart and a spell under phototherapy as he had a touch of jaundice.
We had decided not to get in contact with anyone as Joshua was just a baby and we wanted to enjoy our baby before we faced up to what his future held for him.
Just after christmas we were both getting curious about what sort of life was facing joshua and so we asked joshua's paediatrician and other professionals involved in his care, and the only thing we had was the same information we were given after we found out. We were asking questions that no one could answer which got really frustrating.
We realised that if we were feeling this way then surely there were other people out there who felt the same way and so we set up a website, www.upfordowns.co.uk with the help of my uncle.
Joshua is now nearly 18 months old and he is doing so well that his special needs health visitor (SNHV) has said that he is doing amazingly well and that his development doesnt appear to be that delayed. He is trying to walk and is just like any other baby his age, he does have terible temper tantrums and he also has his moments where he will throw his arms around your neck and give you the best cuddle in the world
just over a year on from setting the site up we have 166 members, The site has turned into so much more though, it is now a community of parents, friends and family who are all, in reality strangers who share a special link and are all part of a special community
thank you for reading this far and sorry it is so long but i am terrible when asked questions so i thought i would be as informative as possible
i also have a few parents on the site who, feeling the same as i am about raising awareness are trying to contact various magazines and their local newspapers
Having a child with downs is a blessing, not a burden and we are better people for having Joshua in our lives
Post by sarahncharlimai on May 1, 2007 20:54:10 GMT
I agree that was really nice i do hope our efforts are not in vain, this site has been fantastic for us i am so pleased i found it and hope that it helps to point people to this site, im sure you have been told a thousand times but i think you both have done a terrific job setting this site up. x x
Just mailed GMTV and asked them to feature a family during that week, was long email on their contact us form and forgot to copy it. But basically mentioned the little boy last yr, said 90% fetuses aborted due to lack of info and that they are one of the best forms of media to raise awareness. Also told them a bit about my story.
E-mailed This morning and my local paper. Just kept it short changed a bit for each but here is the one to my papaer. Downs Syndrome Awareness Week will be the 4th to the 10th June. 90% of Downs foetuses are aborted due to old outdated ideas of children with Downs Syndrome. The Bury Times could be a great help in raising awareness during that week by providing some updated information and hopefully helping some people who have just found out they are carrying a child with Downs or have just had a baby with it.
We found out our son had Downs at 23wks pregnant and didn't think we would cope so were going to have him adopted, the information we received from genetics counsellors didn't help as it was so negative. We changed our mind at 33 weeks and he is fantastic, funny, qute!, mischievous have like any other 2 year old and meeting all his goals just a bit later than his peers and with no health problems (nothing like we expected).
My name is Tace Donaldson, my husband George and I have 2 children, Freya 4 and Leo 2 1/2, Leo has Down's Syndrome, in August last year I discovered a site on the internet called www.upfordowns.co.uk its been great, where we live (Aberdeenshire in Scotland) there is no support network, no other mums like me with a young child with Down's and at times I felt very lonely, the internet is my main source of information about Down's. The people who post on the forum, have been so helpful its nice to have a rant, a cry or just a chat with someone who understands, its nice to have someone to answer any questions or offer advice, its nice to have a virtual shoulder to cry on or someone to offer support through a difficult time.
It is Down's Syndrome awareness week from the 4th to the 10th of June this year and it would be great if you guys could do something positive as people are sadly still very misinformed about Down's Syndrome, especially families who are high risk whilst pregnant, 90% of these couples abort, some obviously for their own very valid reasons but unfortunatley most of them are not given enough positive information and support for continuing the pregnancy. This is so sad as Leo is such a special little boy who makes me smile every day and still brings tears of joy to my eyes when I watch him do little things like eat with his spoon or dance along to music. He is hard work some days, but show me any child who is not.
Thankyou for taking the time to read this, I hope you can do something for us....
Thank you. Do any of you know what sort of things I should get them to put in - what facts and figures etc? Also, my other half isn't too keen on George being in the paper just because he's got downs! Is this just a man thing, burying his head in the sand? One of the reasons I want to do it is because George was born at the end of Downs Awareness Week last year and if I'd seen an article and photo's of cute babies with ds etc just b4 I had him I'm sure it would have helped me. I just want people to know its not all doom and gloom and you get just as much (or more) from a baby with ds than you do from a baby without it. I suppose really I just want it to be accepted and not feared. Also, want people to know that it is insulting when babies and children with ds are identified just by that ie. he's a downs! NO, he's a baby!! Ooh I do go on......Anyone got any ideas? x
well I think what you just said sums up my feelings and most other parents too!! Say that and you can't go far wrong. The issues I find people ask me about are health - are there always health problems (no) and can he ever live independently? (yes why not??) I think it's important to say that times have changed - help is available and these days children with Downs can go on to do whatever they like just as any child can. Can't wait to see the article, well done you and George.