WARRINGTON Town Hall is to be “lit up blue” on Wednesday, February 15 to mark the 10th anniversary of International Angelman Day – a global event of special significance for the borough.
More than 50 international organisations are taking part to raise awareness of Angelman’s Syndrome (AS) – a rare genetic condition that affects about one in 25,000 babies – and to celebrate the lives of those living with the condition.
The condition was first identified by the late Dr Harry Angelman while he was working as a consultant paediatrician at Warrington Hospital in the 1950s
Children with the condition usually cannot speak, walk or even stand unsupported, although in some cases they are able to as they get older. But they are also very happy and laugh a lot – leading to their condition originally being called “Happy Puppet Syndrome” prior to Dr Angelman making his discovery.
The borough council agreed to illuminate the Town Hall to mark the occasion after being approached by the family of five-year-old Maia Manclark, of Paddington, who was diagnosed just a month before her second birthday.
Many other public buildings all over the world are expected to be “lit up blue”.
Maia’s grandmother, Jackie Anderson, from Orford, said: “We are so pleased the council has agreed to illuminate the Town Hall.
“It is obviously an important date for our family but it is also part of the history of Warrington because it was identified by Dr Angelman while he was working at Warrington Hospital.”
Maia was born in August 2017 and at first developed normally.
But when she was about five months old, the family – Mum and Dad Chelsie and Mike and half-brother Jaxon – began to realise her development was slowing down.
Doctors were consulted and Maia had numerous tests to try and identify the cause of her problems During this time she started to suffer seizures – which is common with AS.
She was eventually diagnosed a month before her 2nd birthday.
Jackie said: “As you can imagine, our world fell apart – we knew very little of this condition and feared the unknown.
“I was extremely upset, not only for myself, but trying to find a way to help and support my daughter and her partner who were completely heartbroken.”
Jackie contacted support group Angelman UK – an organisation run entirely by volunteers – people who are carers or are related to people with AS.
They have received wonderful support from the group including one vital piece of advice: “Don’t miss out on the now by worrying about what may never happen in the future.”
Jackie said: “They were right. We now live and enjoy every single moment with Maia. She is developing into a cheeky, mischievous, lovable little girl who brightens up our darkest of days. Anyone who meets her says the same.
“ Although Maia is non-verbal, she certainly has her own little ways on letting us know when she is hungry, not happy with something, etc. But most of the time she is a very happy, cheeky and lovable child.”
Maia is a pupil at Foxwood School at Woolston. She will need lifelong support – but her life expectancy is not affected by the condition.
The family know of four Angelman children in Warrington but are in touch with many others across the world – including some who have reached adulthood.
And the good news is that Maia can look forward to a baby sister later this year – with no more chance of her having AS than any other child.
Maia with Mum and Dad Chelsie and Mike and half-brother Jaxon
