Fresh hope for little Rosie thanks to Essex Freemasons

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Life has been tough for little two-year-old Rosie Harris from Canvey Island, diagnosed at three months old with a rare genetic mutation which prevents her from sweating, no salvia, sitting unaided and profound hearing loss – and one of just three children in the entire world suffering with the same syndrome. But now for the first time there is real hope that Rosie’s life can significantly improve thanks to support from Essex Freemasons.

Unable to hear without the aid of cochlear implants, currently fed through her stomach, constantly being treated with antibiotics and unable to sit or hold her head up, there is only one thing that has been shown to improve her quality of life – regular physiotherapy – a service the NHS has only been able to provide once a month.

That physio is desperately needed on a weekly basis and that is now about to change with a pledge from Essex Freemasons to cover the cost of private physiotherapy every seven days together with a promise to provide the essential equipment that Rosie needs to be looked after each day.

“Rosie’s condition is so rare that doctors are learning from us,” said mum Charlotte. “The NHS started physiotherapy to help strengthen her back and neck and this has really helped, but because of Covid and staff shortages they are unable to provide this service more than once a month.”

“She would clearly benefit if the physio could be applied once a week which meant going private at £80 a time, something we could not afford. Rosie also needed special equipment such as a lightweight pushchair and bath seat which we can also use to take to the beach in the summer months. Essex Freemasons have made this happen and I am so grateful – it is a life changer for Rosie”

It was Philip Tissington, a member of two Lodges meeting at Saxon Hall, Southend - Castlepoint and Counos - who first heard about little Rosie via his daughter. The two Lodges immediately raised and donated around £1,000 to help buy the essential equipment, but it was the physio that would really make a difference.

This was when the Essex Freemasons Community Fund stepped in to provide the funding needed for weekly physio. 

Assistant Provincial Grand Master Rob Eels, explained: “I was so moved by the plight of this little girl and the way that our members responded that I felt we had to do more. The real difference was the ability to find the private sessions of physio which would really help Rosie’s quality of life. I am delighted that this has now been covered by our Community Fund”

Rosie is suffering from what doctor’s call Kilquist Syndrome which was first diagnosed in a boy in the USA seven years ago. Since then, the same syndrome has affected a child in Sweden and Rosie is the third. Charlotte Kirby now believes that there is a 4th case in Egypt.

 

Picture Caption From left to right: Philip Tissington and Alan Anthony (Counos and Castle Point Lodges); Rosie with mum Charlotte; Robert Eels, Assistant Provincial Grand Master for Essex Freemasons and Paul Harris, Secretary of Essex Freemasons Community Fund.

 

Rosie is also seen pictured with a TLC Teddy, funded by Freemasons, which are usually only given to children in A&E units at Hospitals. We thought Rosie was a special case for just such a Teddy.