American Dream
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7 years ago our world changed dramatically when our little bundle of chaos came into the world. Brecon, our son, was born with a very rare genetic condition called dup15q syndrome; so rare in fact that his specific genetic make-up is the first of it's kind on UK databases. This has been a very bumpy road for us, Brecs has all kinds of issues to contend with on a daily basis; ADHD, autism, sensory processing issues, a complete inability to speak, learning difficulties, and more recently, very complicated epilepsy. He has up to 50 or 60 seizures daily, which as a parent, is heartbreaking to watch. The few skills he had have regressed significantly due to this, and unfortunately because this condition is so rare most medical professionals in the UK have never come across it before and are even more clueless than us about to go about unraveling and treating all the different issues.
There is, however, an amazing organisation based in the states called the Dup15q Alliance, who exist solely for the purpose of furthering awareness, funding research and providing information for parents and professionals who are in contact with dup15q kiddos. They run a bi-annual conference, which I was fortunate enough to attend last summer using a small inheritance from my mum who sadly unexpectedly passed away. I can't take Brecs due to all his issues but I am really hoping to attend the Summer 2015 Conference "Stronger Together" since I found 2013 to be an invaluable source of support and knowledge. I was able to ask questions and get information from professionals who are educated about this specific condition, something not available here in the UK, and I was able to meet my extended 'family' which in itself was such an incredible experience as isolation is something now so familiar in our lives.
So, I'm being completely un-British for the sake of my boy and asking you to consider donating some dosh so I can fly out again in 2015. Flights are expensive, as is the hotel, and conference fees, and then while I'm there I kinda need to eat, so all in all, I'm hoping to raise around £2500 to cover everything comfortably. Anything extra we raise I will put towards a special needs trike for Brecon- this is a custom built insane piece of kit that we know he would get so much out of, but costs around £1500. If we get to £2500 then we would love to keep going to get a bike for him.
I am also selling bits of art, but I'm starting uni soon and unfortunately won't have much time to carry on with that once term kicks off. Raising a special kiddo is full time in itself, plus three more kiddos, and then working and uni. It's a little bit busy!
So... my lovely friends, those who know me and those who don't, please PLEASE give a bit of dosh to help us help our boy. Our beautiful boy who is braver than we'll ever need to be every single day.
Thank you so much.
To find out more, visit www.idic15.org or check out my blog www.revelationsofaslummymummy.blogspot.com
7 years ago our world changed dramatically when our little bundle of chaos came into the world. Brecon, our son, was born with a very rare genetic condition called dup15q syndrome; so rare in fact that his specific genetic make-up is the first of it's kind on UK databases. This has been a very bumpy road for us, Brecs has all kinds of issues to contend with on a daily basis; ADHD, autism, sensory processing issues, a complete inability to speak, learning difficulties, and more recently, very complicated epilepsy. He has up to 50 or 60 seizures daily, which as a parent, is heartbreaking to watch. The few skills he had have regressed significantly due to this, and unfortunately because this condition is so rare most medical professionals in the UK have never come across it before and are even more clueless than us about to go about unraveling and treating all the different issues.
There is, however, an amazing organisation based in the states called the Dup15q Alliance, who exist solely for the purpose of furthering awareness, funding research and providing information for parents and professionals who are in contact with dup15q kiddos. They run a bi-annual conference, which I was fortunate enough to attend last summer using a small inheritance from my mum who sadly unexpectedly passed away. I can't take Brecs due to all his issues but I am really hoping to attend the Summer 2015 Conference "Stronger Together" since I found 2013 to be an invaluable source of support and knowledge. I was able to ask questions and get information from professionals who are educated about this specific condition, something not available here in the UK, and I was able to meet my extended 'family' which in itself was such an incredible experience as isolation is something now so familiar in our lives.
So, I'm being completely un-British for the sake of my boy and asking you to consider donating some dosh so I can fly out again in 2015. Flights are expensive, as is the hotel, and conference fees, and then while I'm there I kinda need to eat, so all in all, I'm hoping to raise around £2500 to cover everything comfortably. Anything extra we raise I will put towards a special needs trike for Brecon- this is a custom built insane piece of kit that we know he would get so much out of, but costs around £1500. If we get to £2500 then we would love to keep going to get a bike for him.
I am also selling bits of art, but I'm starting uni soon and unfortunately won't have much time to carry on with that once term kicks off. Raising a special kiddo is full time in itself, plus three more kiddos, and then working and uni. It's a little bit busy!
So... my lovely friends, those who know me and those who don't, please PLEASE give a bit of dosh to help us help our boy. Our beautiful boy who is braver than we'll ever need to be every single day.
Thank you so much.
To find out more, visit www.idic15.org or check out my blog www.revelationsofaslummymummy.blogspot.com
Organizer
Lucy Parr
Organizer
