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Wrexham teenager with a rare genetic disorder to raise cash for centre that has proven a 'lifeline' for him and his family

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Tuesday, July 23, 2019

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A TEENAGER from Wrexham who lives with a rare genetic disorder that affects his nervous system is taking part in a range of events over the summer holidays to raise money for a charity centre which has proven a ‘lifeline’ for him and his family.

Jake Edwards-Owen, 13, from Johnstown, who was diagnosed with Angelman syndrome at just seven and a half years of age, is now taking part in a four week programme of family free fun entitled Passport to Africa, despite his severe physical and intellectual disability.

The activities are being launched to coincide with the release of Disney’s live remake of The Lion King.

The events will be held every Thursday and Friday, from 11 am to 4 pm, for four weeks, starting on July 25, and will help raise money for Dynamic, a Wrexham-based centre for children and young people with disabilities.

The activities will transport young shoppers to the plains of Africa with African dance and drumming workshops, craft sessions and a special meet and greet with real-life bugs from the continent.

Jake and his mum Helen Edwards, never miss an opportunity to do their bit to raise awareness of Dynamic, who have supported the family for five years after Jake’s diagnoses.

Helen Edwards, 49, said: “Jake is a hugger.

“He’ll think nothing of going up to people, either who he knows or otherwise, giving them a big smile and a hug which is wonderful.”

“Even as a baby, when we started to notice he wasn’t developing at the same rate as other children, he was always smiley and happy.

“Although his condition means at times that he can get frustrated, particularly when he isn’t able to communicate how he feels with us and then his behaviour can become challenging, he never loses his ability to smile and laugh which is a very important part of who he is.”

The charity, which is partially funded by Wrexham Council but still needs to raise around £100,000 a year to stay open, provides out of school activities and training for children and young people with disabilities, aged between eight and 19.

The youngsters who attend the centre suffer from a range of disabilities, which include physical, intellectual or sensory impairments, emotional and behavioural issues or chronic illness.

Dynamic currently supports more than 100 young people by holding six weekly after school groups, a Saturday group, activities during school holidays and a major summer programme to support families during the long school break.

Jake attends a club at Dynamic once a week after school and also joins in extended sessions over the summer holidays which include day trips out to places such as Delamere Forest, Chester Zoo and New Brighton on the Wirral.

Jake’s health was questioned after he was born six weeks prematurely and during his nine month old developmental check up, it was found that he was not sitting up unsupported or making babbling sounds as would be expected.

Although delayed development will often be diagnosed in cases like Jake, it is not uncommon for Angelman syndrome not to be confirmed for some time.

Ms Edwards added: “For some years, Jake’s issues were attributed to global delayed development.

“He was tested for autism and when this couldn’t be confirmed, the paediatricians in hospital wanted to do further tests.”

Jake became part of a Deciphering Developmental Disorders study and it was at this point that clinicians started to suspect Angelman syndrome which a blood test later confirmed.

She continued: “I watched some videos on YouTube and recognised Jake straight away.

“I showed them to my sister and we both knew it was the same thing affecting her son Adam too.”

Jake’s cousin Adam, now aged 26, also has the genetic disorder, which was formally identified in 1965 by a British doctor Dr Harry Angelman.

Jake, who is a pupil at St Christopher’s School in Stockwell Grove, is unable to talk, is unsteady on his feet and his disabilities mean he will need round the clock care for the rest of his life.

One of the common traits of the disease, which in Jake’s case is hereditary and caused by a mutation of the UBE3A gene, is that many of those affected smile and laugh a lot and, like Jake, are extremely sociable.

The most common traits of the syndrome can include being easily excitable, stiff and jerky movements, being restless, problems sleeping and a particular fascination with water.

Staff and volunteers will be at all the events, starting from July 25, to collect donations and raise awareness of the Dynamic centre charity.

Source: The Leader
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