THE Tower of Refuge has turned blue – in support of a very special little boy.
Rachelle and Wayne Ashton’s 18-month-old son Rayner is currently being treated for the rare illness Langerhans Cell Histiocytosis.
Rayner’s grandmother Tracey Jones contacted Infrastructure Minister David Cretney MHK to ask if the Tower could be tuned blue to coincide with the famous CN Tower in Toronto, which is also turning blue to mark Histiocytosis Awareness Month.
Mrs Jones, who lives in Douglas, said: ‘Turning the tower blue to help raise awareness of LCH will mean so much to our family. It has been difficult to find information about Rayner’s condition, and raising awareness of LCH and other Histio conditions will help others to find the information they need and help in the search for a cure.’
She said she had contacted the Minister after hearing the news that the government’s Overseas Aid Committee is giving £50,000 in aid to Sudan and Sierra Leone.
‘Phil Gawne, chairman of the committee, justified this by saying he didn’t believe anybody was being treated for cholera in the Isle of Man,’ said Mrs Jones. ‘But there are a lot of people walking about with illnesses that you don’t know about. If you want people to be aware of these illnesses, you need to make them aware. I thought if they can light up the CN Tower in Toronto, they can do it for the Tower of Refuge.’
She said that Rayner was a happy and healthy child. But last year he developed a lump under his arm which was initially thought to be just a cyst. It was removed at Alder Hey hospital in Liverpool two weeks before Christmas but when it was sent away for tests, the rare form of histiocytosis was diagnosed.
Since then, he’s had to go to Noble’s Hospital twice a week for on-going tests and treatment, and he’s also been back to Alder Hey several times.
Langerhans cells are a type of white blood cells which in their healthy state fight infections. In a patient suffering from Langerhans Cell Histiocytosis, these cells are produced excessively.
They spread to different locations of the body such as the spleen, bone marrow, skin and lymph nodes through the blood stream. After reaching an area, these cells damage the local tissues and form lesions all over the body. The cause of the disease is not yet known.
Mrs Jones said the condition can develop in a different way in every child.
‘It’s unpredictable,’ she explained. ‘Rayner might not have any more lumps. He’s happy and healthy, you can’t tell he has this condition. You just learn to live with it.’
Mr Cretney said: ‘It can be a heartbreaking illness, which mostly affects young children and we were only too pleased to assist with Mrs Jones’s request. The Tower will be blue for a week and hopefully it will generate interest and discussion about LCH, as it will during October when we turn the Tower pink for Breast Cancer Awareness Month.’
The Manx Electricity Authority has also supported the raising awareness of this rare illness by switching on its multi-coloured decorative lighting at the Pulrose power station for one week.
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Sunday 26 May 2013
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