New Malden girl with rare genetic condition given ‘once in a lifetime’ visit to the Lord Mayor of London

New Malden girl with rare genetic condition given ‘once in a lifetime’ visit to the Lord Mayor of London

by 13th January 2017 0 comments

Brave New Malden girl Zoë Armstrong-Gash, aged 9, who suffers from a very rare genetic condition, ADHD and also autism, had the time of her life when local children’s charity Momentum gave her tickets to attend the annual Lord Mayor of London’s Children’s Party last Saturday.

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Zoë, who attends Coombe Hill Junior School, was thrilled to find out last year that Momentum had chosen her and a friend to attend Dr Andrew Parmley’s party at Mansion House, held annually for children aged between six and nine. Momentum, the Kingston Mayor’s chosen charity of the year until May 2017, had received the tickets via The Mayor of Kingston’s office. Zoë, her mother Britt and her friend Aphra Fearon-Low, 9, were also chauffeur-driven to the party and back by the The Mayor of Kingston Councillor Geoff Austin’s personal chauffeur Brian Sullivan.

Guests were treated to games, a tea party, a Punch and Judy show, a live animal show, a conga led by Dr Parmley and a live band in the 18th century State Rooms and Egyptian Hall.

Zoë’s mother Britt said: “It was such a lovely treat for Zoë and we can’t thank Momentum enough for the amazing experience. The children were all treated like royalty and Zoë declared it officially the best day of her life. One of the highlights were the eclairs which were filled with chocolate cream instead of plain cream. Zoë thought they were just the best thing ever!”

Zoë inherited a very rare genetic disorder from her mother called Osteopathic Striata with Cranial Sclerosis (in layman’s terms stripy bones with thick skull), which meant that at birth she had to be transferred to Great Ormond Street and have a tracheostomy inserted. She has spent much of her life in and out of hospital with chest infections and other complications and shortly before her fifth birthday Zoë started having mini strokes. Sadly these resulted in her suffering from learning difficulties. She has had two major neurosurgeries which unfortunately have been unsuccessful. Zoë also has ADHD and mild autism.

Britt said: “On paper it all looks hideous but, in reality Zoë is an absolute joy and inspiration. The reality is that she is a feisty, funny, caring nine-year-old, who happens to get very unwell from time to time and no one knows what her future holds.”

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