SWAN UK (syndromes without a name) is part of the charity Genetic Alliance UK offering support and information to families of children with undiagnosed genetic conditions. To find out more about becoming a member please email firstname.lastname@example.org. To find out more … Continue reading
Apologies for the lack of information here at the moment, we are currently building an exciting new website that will be coming soon.
In the meantime you can read some of our old blog posts that you might have missed previously.
We will be back soon with an exciting new look and lots of new information for you.
If you have specific questions please feel free to email us email@example.com.
Thanks for your patience,
The SWAN UK Team
ItsSmallsWorld: How Fragile Is This Life
This was Friday 25th April – Undiagnosed Children’s Day #UCD2014. This year Undiagnosed Children’s Day had a theme: “It’s a Mystery” to highlight the fact that approximately 50% of children undergoing genetic testing on the NHS may not get a diagnosis for their condition. Not having a diagnosis can very be isolating for families and it can be difficult to access information and support. SWAN UK supports families living without a diagnosis and helps create a network of support, with families meting up regularly across the country.
In the Midlands, we chose to celebrate Undiagnosed Children’s Day at SNAP (Special Needs Adventure Playground) in Cannock. And what a day it was. The weather was wild – wet and windy, but that didn’t stop us all from having fun in the large indoor soft play area and the sensory room. Parents chatted, some old friends, some meeting for the first time. SWANs and their siblings had fun dressing up, decorating biscuits, doing craft activities and playing with all of the toys. The staff at SNAP were very welcoming and even painted fabulous SWANs on all of our faces.
It was a lovely day spent with friends – old and new. Here’s some quotes about and photos of the day:
An exciting update from the DDD team –
“There are now over 3,600 patient families enrolled in DDD from around the UK. Importantly, we are now able to recruit adults with severe undiagnosed developmental disorders as well as children. Scientists at the Sanger Institute are working hard to interpret the vast amount of genomic data already generated in the project, so that we can feedback the most clinically relevant findings and do world-leading research to uncover new genes. At the end of 2012, we had reported around 70 potential diagnoses to clinical teams, both from microarrays and exome sequencing. The first half of next year will be focused on increasing the number of variants fed-back to clinical teams, and working towards our first key scientific publications. We wish everyone involved in DDD a happy and healthy new year…”
To find out more about progress with the DDD study check out their recent newsletter.
Forgive me if I lack in festivities, as it is sometimes hard to smile, I am sure I will get there eventually, it just might take me a while. Three years ago almost exactly, we received some difficult news, You weren’t quite the same as your brother, in our point of view.
There were so many unanswerable questions, that it really got us thinking,
As Christmas happened around us, our hearts were very slightly sinking.
Would you ever walk or talk? We just didn’t have a clue,
Every parent wants what’s best and this was no different – you’d always be you.
People didn’t know what to say, but you were still our beautiful boy,
Nothing we were told could take away that joy.
It has certainly been a journey, not one that’s always been smooth,
We’ve met some wonderful people and waved to angels on the move.
You’ve come so far and done so well, that we’re all really proud,
Even if you are very cheeky and often rather loud.
You’re a happy chap who’s brought us so much, so no need to drown our sorrows,
We love you more today than yesterday, but we’ll love you more tomorrow.
Our very first Christmas event was held on Saturday 2nd December in Cookstown Leisure Centre. We were absolutely delighted that seven families were able to attend the party (despite some illness worries the week before.) We had four families at our summer outing so we’ve nearly doubled in size in just a couple of months!
We would like to say a massive THANK YOU to Waterbabies for our grant, which we put to good use. We were able to book a suitable venue in a central location; this was great because our families were travelling from right across Northern Ireland. We also used some of our grant to buy festive decorations (which are safely packed away for next year) and party food to really get us in the festive mood! We were very lucky that Santa was able to take half an hour out of his hectic schedule to make an appearance and he gave each of the SWANs and their brothers and sisters a small gift. We managed to borrow a fantastic parachute from a local GB company so we had great fun playing games with it during the rest of our time together.
Everyone really enjoyed the chance to meet and chat in ‘real life’ and get to know each other even better. The best bit, however, was the opportunity to meet all the amazing SWANs and their extra special siblings. We all feel that this is the beginning of something very special – new friendships, celebrating the good times together and supporting each other through the not so good. We are really looking forward to more events in 2013 and welcoming even more members.
The SWAN Northern Ireland Christmas party was made possible thanks to the generosity of Waterbabies Oxford.
On Saturday Lauren, the SWAN UK coordinator and her sister Amelia took to the skies to raise funds for SWAN UK – despite having to wait til last to jump, they successfully made it back to solid ground.
The money raised will go towards supporting social events for SWAN UK families and it’s not too late to donate – you can find their fundraising page here.
I was never meant to do things the easy way, I certainly wasn’t built for working 9-5!
It wasn’t until my 20 week scan that I knew what I needed to do.
I was put here to do a job that most people couldn’t, that most people wouldn’t even imagine happening to them, and that was to raise my gorgeous little boy Phoenix.
From the second I was told that he had ‘problems’ my motherly instinct took over. Despite feeling pushed towards a termination and I fought for his survival. I stood my ground and didn’t let them bully me into it.
It was the best decision of my life – this is why I am here!
People may think having a child who doesn’t walk, talk, sit or stand is ‘really sad.’ I hear so many generic quotes . . ‘I couldn’t do it’ or ‘you must be really strong’….
But when I sit and look at my life, it is perfect, I wouldn’t change a single thing.
I often look at ‘normal’ parents and wonder ‘how do they do it’ or think it must be tough for them’..
You see I like to look at the positive..
I can put Phoenix down on the floor and walk away knowing he will be there when I come back. I don’t have to worry about him eating something he shouldn’t or putting his fingers in places he shouldn’t!
If I’m out and about I don’t need to stop and crack out the packed lunch and sit down making sure that he doesn’t spill his drink down himself or pick all the ham out of his sandwich! I just plug him in and go!
I always get complimented on how quiet he is when we catch the bus and he is quite the local celebrity around here! I have never had to raise my voice to him or even simply tell him ‘no’. Isn’t that the best kind of parent?
We don’t have to worry about being remembered for being mean, we are all remembered as the mummy that was there with them through the tough stuff, we are the best kind of mummy.
Don’t get me wrong I would love Phoenix to walk, talk and all the rest. … But then he wouldn’t be Phoenix.
I am very grateful for the hand I have been dealt, it is a winner!
Over the Summer the lovely lot at Waterbabies in Oxford decided to do sponsored swim in aid of SWAN UK.
We were both amazed and delighted when the final amount raised was over £6000!
We thought long and hard about how to spend the money and decided we would use it to provide grants for families to arrange social events in their local areas.
The first Waterbabies sponsored event took place last weekend in Bristol with 12 families coming together. As the pictures show, everyone had a fab time!
“ It was such a fab day :-) So lovely to meet up with fellow SWAN families who all share a very special bond… Thank you to everyone who helped make it possible! Looking forward to our next South West meet up <3”
“Everyone got on so well together, the Dads were all chatting, Mummys all pulling together and all the children, including the siblings, played together sooooooo nicely :-) xxxx”
“Was a fantastic day. To meet up with my special swan family was out of this world. A very great day with fun and laughter feels like we’ve known each other for years, without swan we would have never met! The party was priceless xxxxx”
“Was such a lovely day. The children were amazing. It felt like I had known everyone for ages. So special knowing we all have unique children and each other there for support xx”
“There was no awkwardness, everyone got on & felt like we had know each other for years! Was such a loving warm atmosphere & great to be in our own little bubble for a few hours :-)The day went without a single hitch & was completely stress free & fun! Was an amazing experience & cannot wait for the next! X”
“Was a truly great day. Great atmosphere and for me it was great that my daughter was happy to go and play without me by her side the whole time – which is massive because that very rarely happens! She obviously felt very comfortable with everyone that was there – she was even going up to other mummys and holding their hands. There was one in particular she took a shine too – or that might of been her cakes lol :) There was no awkwardness, it was like we’d all known each other for years!! I can’t wait for the next and hopefully meet even more swan familiess!! So a BIG thank u to Waterbabies for raising the money so it was possible and to all that helped organise it!! Xxx”
“It was amazing to see the final product, from a mention in passing about a Christmas Get Together…the announcement of the Waterbabies grant giving us the inspiration (and funding) we needed…the decision making process on dates, the even tricker prospect of location…the team effort involved in putting it together..the excitement leading up to it and the fantastic day had by all when it all finally came together! x”
“It was a lovely day my chap was a bit nervous at going as he’s not chatty like me but he really got involved with the other dads. Everything about it was a great success and I’m honoured to belong to such a warm and caring group. I’ve been telling colleagues and friends about the day and what swan is and they all think it sounds wonderful! A big thanks to water babies for them to make it happen. Xx”