Family of girl, 5, speak out on International Angelman Day

Maia Manclark, from Paddington, was born in August 2017. At around five months old, her family realised that her development was slowing down and that she was not achieving her milestones.

After a number of conversations with doctors, health visitors and medical professionals, the youngster’s family were told she had possible global development delays. She was then referred to see a paediatrician and went through the process of having many tests to try and rule out or identify the cause of her delays.

During this time, Maia, who is now a pupil at Fox Wood Special School in Woolston, began to have seizures so as part of the testing, she had a genetic test.

Two months before her second birthday, Maia was diagnosed with a rare genetic condition called Angelman syndrome, a rare condition which affects around one in 250,000 babies.

Speaking to the Warrington Guardian, Maia’s grandmother Jackie Anderson said: “As you can imagine, our world fell apart – we knew very little of this condition and feared the unknown. 

“My daughter had an appointment with a geneticist a few days later and was given more information about the genetics part of the condition, handed a leaflet and told to go online and join the support group Angelman UK for any further information.”

The evening of the day that Maia was diagnosed, Jackie contacted the number from the support group leaflet and spoke to a ‘lovely’ lady who helped to calm her down.

“My initial upset and concerns were a mixture of the unknown, what kind of life would Maia have, who would look after her in her adult life, how would we deal and cope with her seizures, how would we deal with the fact she may never walk, that she will always be non-verbal, how will we communicate with her, grieving for the life we thought we would have with our first grandchild,” Jackie added.

“The lady was very calming, she told me her experiences with her daughter, who is now 23 years old, and how she had handled her emotions over the years. 

“She told me not to worry about things I was unable to change, don’t look too far into the future worrying about what may or may not happen and live and take each day as it comes. 

“She made a point that has stuck with me ever since – ‘don’t miss out on the now by worrying about what may never happen in the future’ and she was exactly 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 and anyone who gets to meet her also says the same.”

Maia with her grandma and grandad (Image: Maia Manclark)

Maia, now aged five, can bum shuffle, crawl and climb everywhere. She is unable to stand alone and isn’t walking yet, but her family are hoping this will come in time.

Although she is non-verbal, she has her own 'little ways' of letting those around her know when she is hungry or not happy with something. But most of the time, Maia, who has a half-brother called Jackson and a baby sister on the way, is very happy, cheeky and a loveable child.

Maia’s family aim to raise awareness of the condition not only on International Angelman Day, but every day.

Jackie said: “Angelman syndrome is such a rare condition and as far as we are aware there are only three other families in Warrington affected by this.

“The symptoms of Angelman syndrome can be confused with other disabilities like global development delay, Cerebral Palsy, severe autism and epilepsy and unless genetic testing is carried out, then Angelman syndrome may not be identified. 

“Maia was only diagnosed just before her second birthday after a constant battle from her parents asking for tests to be carried out to try and find out why Maia had the delays she had. 

“Hopefully, by raising awareness to other families in similar situations, they may get some answers and then be able to reach out to the relevant support groups available.

“We also think that Angelman syndrome should be recognised especially within Warrington as the condition was identified by Dr Harry Angelman (who it is now named after) who was a consultant paediatrician in Warrington Hospital in the 1960s.”

Warrington Town Hall will be lit up blue this evening in honour of International Angelman Day.

You can find out more about International Angelman Day here.