Warrington landmarks shine blue in honour of rare genetic disorder

As part of International Rare Disease Month, Wednesday, February 15 was International Angelman Day, with the 15th being significant as it refers to the chromosome impacted by Angelman syndrome.

It’s a rare genetic disorder that affects around one in 20,000 babies born each year with children experiencing delayed development, severe learning difficulties and little or no speech as well as issues with movement and balance.

It is named after Warrington paediatrician Harry Angelman, who identified the syndrome after three children with different disabilities were admitted to his ward in the 1960s, and he believed there was a common cause for their illness.

Dr Harry Angelman, who identified the syndrome in the 1960s

On Wednesday evening, Warrington Town Hall and Gulliver’s World joined forces with other UK landmarks and civic buildings to light up blue to mark the 10th anniversary of International Angelman Day and Warrington families came together for the occasion.

Earlier this week, we featured two children who have Angelman syndrome – Lewis Owen and Maia Manclark.

Lewis, from Great Sankey, is an active nine-year-old who goes to Green Lane Community Special School.

Nine-year-old Lewis Owen

He has additional sensory needs which means he struggles with food and finds it difficult to sleep at night.

When he was seven, he was diagnosed with Angelman syndrome after a two-and-a-half-year study into his parents’ DNA, and since his diagnosis mum Natalie has started a social media page to raise awareness of the condition.

Natalie says Lewis is mischievous but struggles to sleep and despite his happy personality he also suffers from anxiety.

Natalie said: “Lewis has come a long way since the initial diagnosis and settled into school.

“He has worked so hard working towards his targets but we still have so much to learn and explore.”

READ MORE:
Amazing nine-year-old smiling through rare genetic illness

Maia is a ‘loveable’ and ‘cheeky’ five-year-old who, at five months old, wasn’t achieving her milestones and after conversations with doctors, health visitors and medical professionals, her family was told she had possible global developmental delays.

Five-year-old Maia Manclark

Maia, who is now a pupil at Fox Wood Special School in Woolston, began having seizures and genetic tests showed she had Angelman syndrome.

Maia’s grandmother Jackie Anderson said: “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 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.

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

Families gathered outside the Town Hall on Wednesday evening to see it lit blue