A LITTLE girl from Canvey is just one of three children in the world suffering from a rare condition.

Rosie Harris was diagnosed at three months old with a rare genetic mutation which prevents her from sweating, producing saliva, sitting unaided and has caused profound hearing loss.

Aged two, young Rosie is one of just three children in the entire world suffering with the same syndrome.

Her condition, known as Kilquist Syndrome, requires expensive and regular physiotherapy. It 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.

She is unable to hear without the aid of cochlear implants, has to be fed through her stomach, and is being treated with antibiotics and unable to sit or hold her head up.


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

“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 stepped in to fund private physio, as the NHS has only been able to provide monthly sessions, and specialist day-to-day equipment for Rosie.

“I am so grateful – it is a life changer for Rosie,” added Charlotte.

Essex assistant provincial grand master Rob Eels said: “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”