About

Where it all began….

Future of Down’s began in another forum, tucked away in a bigger parenting website. A few of us mums were chatting and saying we needed a website dedicated to “us” and so FoD was born!! Those lovely ladies now moderate the message boards – a space which is private and safe for parents to chat. We also love how our facebook group has taken off! We welcome friends and other family members to join on facebook too so that they can glimpse our lives (find the link on the “home” page or seach for “Future of Down’s” on facebook). All in all, FoD has been a lifeline for many involved and certainly for a lot of our members. Lots of friendships have been formed, lots of advice has been given and received and most About Future of Down's - Seren and Ava

importantly of all, our children have been celebrated. Now meet some of the founding members!

Helen – Founder, Moderator & Co-Owner

I never intended to own my own website, but I started FoD for selfish reasons and wouldn’t have done it without all the other mum’s advising me on what to do. I wanted somewhere dedicated to us – parent’s of kids with Down’s syndrome.

I also wanted somewhere where we could celebrate our kids openly and also ask for help and advice when things were getting a bit tough. Parenting is hard, full-stop. Children are complex and we ALL have bad days, whether we have children with Down’s syndrome or not, but somehow it’s always better to relate with parents who know what you are going through and its nice to have other parents of children with Down’s syndrome to turn to. So about me… I met my lovely husband Matt in 2003. We married in 2007 and had our first daughter Ava in 2008. I fell pregnant as soon as we decided to start trying for number 2 but sadly that ended in miscarriage. I was thrilled to find I was pregnant again shortly afterwards… not planned really, more of a happy surprise! We had a “high risk” triple test at 16 weeks, but I already knew something wasn’t right with the pregnancy. Finding out I was “high risk” for Down’s syndrome just made me realise what was going on! We decided against invasive testing as I feared another loss, and I already “knew” what an amnio would tell us. Seren (our second daughter) was born in 2010 with a little extra! I saw she had Down’s syndrome the minute she was born. For my husband, the experience was slightly more traumatic, but it didn’t take long before he was ok too.

Our third daughter Violet was born in April 2012 and we are a very complete family!

My beautiful daughters - image courtesey of www.lonerosephotography.com

Now the other members of the website would like to introduce themselves!

Paula – Co-Owner & Moderator

Hello,

Paula here, tired and old minion of the hoard otherwise known as The Loftus Clan, all seven of them. Yes you read that right SEVEN.

This could get long so I’ll do my best to provide the abridged version, or no one will make it to the end..

Born and brought up in Liverpool of Irish descent, of course. Met hubby John at my cousins wedding October 24 th 1984, married 1989 . Qualified as a Psychiatric Nurse 1990.

Connor my eldest born 1991, very not nice, he has Aspergers, my Dad died 4 days later. Eamon, born 1994 ASD and ADHD. Hugh born 1999, Dillon 2001, was devastated wanted a Girl , cried everyday since spotting a “wiggy” at 20 week scan.

Lots of arguments etc etc eventually got my own way and we said we would try once more, did the timing thing and hey presto Evelyn arrived 2004, gave all the baby stuff away and lost twins at 12 weeks, mmc, 2007, the pregnancy wasn’t planned but I was devastated. Afterwards we , didn’t actively try just didn’t actively try to stop it. Tara arrived 2008.. So we had finished, that was it.

Then contraceptive malfunction,, mild panic,, mild because of my age and history of losses, straight to Sainsbury’s, £22.35 later off home I went secure in the knowledge all would be fine.

The pill made me feel sick as a parrot within hours but weeks later realised the sickness hadn’t gone away,, stroll on pregnancy number 26. Hubby did mention “getting rid” I couldn’t do it.

So paid for NT scan and bloods, not good, Orla had an NT fold of 3.6mm it gave me a risk of 1:2 for DS, was really scared, heartbroken. When I got my written results also had increased risk for T14 and T18, then when I googled got really scared, started praying that she only had DS LOL. Decided the night before my amnio appointment that I would actually have it,,, never forget the results phone call.

Friday 10.05, could tell it wasn’t an all clear by the voice all sullen morose sad “ Yes it’s a little girl, I am awfully sorry to tell you it is 97.5 % certain Downs, there is a slot available 09.30am Monday for a termination. Do you want to book it?”, I was gobsmacked, then angry it was all in one breath, I could feel Orla wiggling, I think I might have told her to F**k OFF.

Orla arrived at 37 weeks on the dot, early hours of 23^rd December I hadn’t finished the Christmas shopping… The rest as they say is HISTORY,,,,,,