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Parents of Martha Taggart raise awareness of Angelman syndrome for Jeans for Genes day

00:01, 18 September 2018

updated: 16:29, 24 September 2019

Like any parent, Lee and Charmaine Taggart would give anything to hear their daughter say ‘mummy’ or ‘daddy’.

But at six years old, Martha has still to utter a clear word because of a rare genetic condition.

Now the family from Bearsted is sharing their story in a bid to generate support for Jeans for Genes day.

Martha Taggart, 6, was diagnosed with Angelman syndrome at the age of three-and-a-half
Martha Taggart, 6, was diagnosed with Angelman syndrome at the age of three-and-a-half

Martha was born with Angelman syndrome, an uncommon neurological disorder which for many children means they may never walk or talk.

The condition causes severe learning disabilities and affects one in 15,000-20,000 births.

Health and safety consultant Lee, 40, and Charmaine, 39, a statistician, do not know if they will ever hear their daughter say their names.

Lee said: “Communication is difficult. She cries and she laughs but she can’t really talk. Having three kids, we watch a fair bit of Mr Tumble so we picked up some signing from that and Charmaine and I have both learnt how to do Makaton sign language. Martha gestures and takes your hand if she wants something.

“Sometimes she will say something and we will think ‘Was that a word?’

“I’d give anything to hear her say dad.”

Martha with her parents Lee, and Charmaine, and her brother Solomon, three, and sister Norah, who is one
Martha with her parents Lee, and Charmaine, and her brother Solomon, three, and sister Norah, who is one

“We know she understands far more than most people give her credit for.

“I was chatting to a mum the other day who was moaning about how her child talks non-stop and I just thought ‘You don’t know how lucky you are’. There are lots of things most parents take for granted which Martha may never do.”

The couple have lived with uncertainty for years since Martha’s diagnosis, and developmental milestones are never guaranteed.

Shortly before Martha’s fourth birthday, she took her first steps. Lee explains, “I remember very vividly the first time she took a few steps. I was sat on the stairs at the end of the hall and her mum was by the front door, it brought tears to my eyes that day. We’d been living with uncertainty since her diagnosis.”

“I’d give anything to hear her say dad" - Lee Taggart

“I live in hope that one day someone will develop a cure for Angelman syndrome. That is why we are trying to raise awareness and funds through Jeans for Genes. Every penny counts.”

Jeans for Genes Day raises money for Genetic Disorders UK, the charity that aims to change the world for children with genetic disorders with funds raised going towards its work. Funds raised will go to the vital care and support they need.

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