CURE THIS!
Victoria Moralee is raising money for AngelmanUK (previously ASSERT)
Participants: Helen Moralee, Marianne Mazis Peters, Shelley Richardson
Story
Thanks for taking the time to visit my JustGiving page.
Knowing from the start something wasn't quite right with Lola has been very hard... Getting people to listen and not dismiss my claims was real torture, in fact I thought I was going mad! Back and forth to the doctors begging for someone to listen! Unfortunately/fortunately 19 April 2018 Lola started fitting and she carried on fitting for 24 hours. The doctors then agreed this wasn't something that happened to typical children and started investigations. Thankfully she was under some amazing doctors who had knowledge of Angelman's and the tell tale signs so tested her for it.
Everything in the list of characteristics was what I had been telling people for ages, frequent laughter and smiling, often with little stimulus, being easily excitable, often flapping the hands, being restless (hyperactive), having a short attention span, problems sleeping and needing less sleep than other children, a particular fascination with water. Tongue thrusting, wide mouth, wide gaps in teeth, pale skin.
Angelman syndrome is a complex genetic disorder that primarily affects the nervous system. Characteristic features of this condition include delayed development, intellectual disability, severe speech impairment, and problems with movement and balance (ataxia).
Lola may never walk (but it's my goal) SHE WILL!! and will more than likely never talk. She's not daft like she knows exactly what's going on and has everyone wrapped around her little finger already.
One amazing thing with Angelman Kids is there happy demeanor, they literally laugh and smile all day long, even when Lola is sick in hospital shes still knocking out the smiles. She really is a little dream.
When your given the news that your child is disabled quite profoundly you feel like your worlds just ended and you don't think you can cope, you wonder how long will she live, who will take care of her when we're not around... all the worries rush through you head.... Thankfully it's not life limiting and hopefully the cure is just around the corner and my baby will lead some sort of normal life in the future!! After the dust settled I realised that I shouldn't be sad, special kids come to special people and I have been lucky enough to have Lola and the little joy she is, yes she's a constant worry and hard work as she doesn't sleep great but that's it, no paddy's, no winging, no back chatting haha. Everyone that meets Lola literally melts as she is just the cutest thing in the world.
Please donate anything you can as they are SO close to a cure. America are actually testing a drug as we speak on kids 4-12 so this really is massive!
Thankyou!!
Victoria, Helen, Marianne and Shelley
Knowing from the start something wasn't quite right with Lola has been very hard... Getting people to listen and not dismiss my claims was real torture, in fact I thought I was going mad! Back and forth to the doctors begging for someone to listen! Unfortunately/fortunately 19 April 2018 Lola started fitting and she carried on fitting for 24 hours. The doctors then agreed this wasn't something that happened to typical children and started investigations. Thankfully she was under some amazing doctors who had knowledge of Angelman's and the tell tale signs so tested her for it.
Everything in the list of characteristics was what I had been telling people for ages, frequent laughter and smiling, often with little stimulus, being easily excitable, often flapping the hands, being restless (hyperactive), having a short attention span, problems sleeping and needing less sleep than other children, a particular fascination with water. Tongue thrusting, wide mouth, wide gaps in teeth, pale skin.
Angelman syndrome is a complex genetic disorder that primarily affects the nervous system. Characteristic features of this condition include delayed development, intellectual disability, severe speech impairment, and problems with movement and balance (ataxia).
Lola may never walk (but it's my goal) SHE WILL!! and will more than likely never talk. She's not daft like she knows exactly what's going on and has everyone wrapped around her little finger already.
One amazing thing with Angelman Kids is there happy demeanor, they literally laugh and smile all day long, even when Lola is sick in hospital shes still knocking out the smiles. She really is a little dream.
When your given the news that your child is disabled quite profoundly you feel like your worlds just ended and you don't think you can cope, you wonder how long will she live, who will take care of her when we're not around... all the worries rush through you head.... Thankfully it's not life limiting and hopefully the cure is just around the corner and my baby will lead some sort of normal life in the future!! After the dust settled I realised that I shouldn't be sad, special kids come to special people and I have been lucky enough to have Lola and the little joy she is, yes she's a constant worry and hard work as she doesn't sleep great but that's it, no paddy's, no winging, no back chatting haha. Everyone that meets Lola literally melts as she is just the cutest thing in the world.
Please donate anything you can as they are SO close to a cure. America are actually testing a drug as we speak on kids 4-12 so this really is massive!
Thankyou!!
Victoria, Helen, Marianne and Shelley