Nine-year-old Sophie Birtles has been chosen to be the official starter of this year’s Manx Telecom Parish Walk. She will wave the Manx flag at the NSC on June 23 to signal the start of the Island’s biggest mass participation sports event.
Sophie was born with a degenerative condition called Juvenile Sandhoff Disease which attacks the muscles and brain. She showed symptoms when she was five-years-old, but because the disease is extremely rare doctors weren’t able to correctly diagnose her condition until last year. There is no cure and children with the disease rarely live beyond their teenage years.
Sophie’s mum Alison says she is not aware of anyone in the Isle of Man or the UK with Juvenile Sandhoff Disease, and has only been able to find one family in the USA with a child suffering from the same condition. For Alison, her family, and friends, every day with Sophie is precious and whenever possible she is treated to special days out and holidays. Earlier this year Sophie went to Portugal and swam with dolphins thanks to the Wish Upon A Dream charity. Plans are being made to take Sophie on a trip to Lapland to see Santa Claus this Christmas. Alison’s uncle Jason O’Neill and five of his colleagues from Manx Telecom’s Finance Department, plus Alison’s cousin Karl Kelly, who works at Fairbairn Private Bank, will all be taking part in the Manx Telecom Parish Walk to raise funds for Sophie’s trip to Lapland. Alison said:
“So many people who take part in the Parish Walk will be raising money for charity and other good causes so it’s a great event to support. Sophie’s really looking forward to waving the Manx flag to start everyone off and we’ll be giving a special cheer for Jason and his colleagues, and Karl.”
Sophie was born a beautiful, healthy, baby on September 10, 2002 and was fine until she was five-years-old when she began to be unsteady on her feet and also developed a tremor. Sophie was then referred to Alder Hey Hospital in Liverpool for an MRI scan but she was only diagnosed with Juvenile Sandhoff Disease in June of last year. Alison said:
“Sophie now relies on her wheelchair and walking frame to get around and her speech is slurred and slow. Her co-ordination is poor which makes it difficult to do simple tasks which makes her very frustrated. We know that this is only the beginning of the disease and have been told to prepare ourselves as Sophie continues to deteriorate she may lose her sight and hearing, and as her muscles get weaker she will be reliant on a feeding tube as she will not be able to swallow. Doctors tell us that children with this rare disease usually have a life expectancy of 13 years. We are lucky to have a very good team of health care professionals to help Sophie - including Rebecca House, the Special Needs team at Onchan School and a physiotherapist to mention a few. We have learnt a new way to live life, and that is to live one day at a time. As parents it is our duty and our pleasure to make sure that Sophie lives her life to the fullest and that she can experience everything that life has to offer within her limitations.”
It’s expected that participants in this year’s Manx Telecom Parish Walk will raise around £600,000 for charities and other good causes.
Photo caption - Sophie Birtles, aged nine, gets in some practice waving the Manx flag which she will do to start the Manx Telecom Parish Walk at the NSC on June 23. She is pictured on the NSC track with her parents Alison and Andy.