Alice Dolan will run the London Marathon for Retts UK after her daughter's diagnosis with the syndrome.
The syndrome is a severe, life-limiting genetic neurological disorder and causes profound learning disabilities.Ms Dolan is to run the London Marathon in aid of the charity on Sunday, the same day her daughter celebrates her seventh birthday.
"She then started to hold her breath and stopped looking at me in the eye. Eventually she stopped doing anything."It is a rare genetic disorder that affects brain development and results in severe mental and physical disability.It is present from conception but usually remains undetected until the child - often from the age of one - starts to regressAfter a visit to the GP, Niamh was referred to a neurological specialist in London, where her diagnosis was confirmed.
"It's only been in the last couple of years that I've started to process it all fully - that this isn't going away, it's incurable."We are doing everything possible to give her the best life possible."Ms Dolan is determined to raise awareness about the condition and Rett UK, which she says has provided "amazing" support."I've never been a natural runner but in lockdown I started running," said Ms Dolan.
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