Welling mother talks of her pain of passing on rare progressive eye condition to her son
PUBLISHED: 10:38 27 February 2014 | UPDATED: 12:02 27 February 2014
Any parent would be devastated to hear that their child had a rare genetic disorder with no cure available at present.
But mother Emma Salisbury, 42, will not give up the fight to reverse a progressive eye condition which will soon cause her 14-year-old son Tommy to go blind.
Tommy suffers from choroideremia, a genetic condition which affects one in 50,000 people.
And all the family’s female members could pass on the disease to their children as “carriers” of the condition.
Emma now fears her youngest son Johnny, four, could also have the defective gene but she cannot bring herself to have him tested because she “cannot bear to find out” if he does.
Emma, of Yorkland Avenue, Blackfen, who also has a 15-year-old daughter, Amelia, with husband Paul, said: “It has taken a long time to get to this stage where I am not crying every time it is mentioned.
“I was devastated when he was diagnosed. I really felt as though it was the worst day of my life.”
Emma’s grandfather, who also had choroideremia, went blind when he was 40 after years of struggling to see anything in darkness or in his peripheral vision.
The same is likely to happen to Tommy as the Welling School pupil grows into a teenager.
“At the moment he is leading a normal life and he is playing football,” said Emma.
“It’s a mother’s worst fear to know that your child has an eye condition that’s currently incurable and will cause them to lose their sight.
“We’ve put our hearts and souls into fundraising and are delighted to have been able to support the initial steps to help make the clinical trial possible.”
Since Tommy’s diagnosis at the age of five, Emma and her mother-in-law Dot Grindley have raised £360,000 to support research into the disease.
“I seriously believe in the next couple of years Tommy will have some treatment that will make a difference,” said Emma, who works as a marketing secretary.
Relatives and friends of the Salisburys have thrown their support behind the cause.
Emma has 43 friends and family members joining the London Mud Run next month to raise more cash for the Tommy Salisbury Fund of eye disease charity Fight for Sight.
“We have raised all this money and have funded all this research which has led to the first clinical trial of the eye,” explained Emma.
“We are still fundraising. The operation is very traumatic – scientists have to detach your retina, so it is not something you can do now and again. They are working out other ways of getting new cells to the eye.”
Family friend Alan Cousins, 50, a roofer of Queenswood Road, Sidcup, is running the London Marathon in April to continue the push for funds.
“I am massively grateful for everybody who fundraised for us,” said Emma. “We are just really lucky for all our friends and family.”
To donate to Mr Cousins ahead of the London Marathon on April 13 visit www.virginmoneygiving/alancousins.amigos