Welling mother wears eye fascinator to Ascot to raise profile of charity helping her son
PUBLISHED: 10:49 26 June 2014 | UPDATED: 14:07 26 June 2014
When a mother from Welling heard that her child had a rare genetic disorder which would cause him to lose his sight, she was understandably devastated.
But with the help of family, friends and others affected by the same condition, Emma Salisbury has raised an incredible £380,000 for medical research into how to halt the progressive eye condition, Choroideremia, which affects her 14-year-old son Tommy.
The results of the research have been positive, and following a clinical trial which took place in 2011 there is now a good chance of finding a way to stop the progression.
Emma said: “Tommy was diagnosed in 2005 and since then we started raising some money for the Imperial College London.”
Emma founded the Tommy Salisbury Choroideremia Fund within Fight for Sight, and without the funds raised by them the world’s first gene replacement clinical trial for Choroideremia would not have been possible.
“I don’t think for one second they thought we would raise as much as we have!” Emma said.
“They have also moved forward with the research and I think that helps, at least for the last five years the news every year has got more and more positive.”
Emma explained that research in the lab had been successful and that researchers had passed this on to clinics where trials had taken place.
“They got in touch with an eye surgeon who took it from the lab into the clinic and did the first trial in 2011.”
The research at Imperial College London was led by Prof Miguel Seabra and played a key role in identifying the function of the protein causing Choroideremia, enabling the clinical trial led by Prof Robert MacLaren.
Emma said that 12 men had been involved in the trial and one of them had noticed fantastic results since being involved.
“It’s completely stopped, he’s had no more progression and actually he’s had a little bit of improvement.
“They have injected these cells into the eye that will now regenerate rather than die.
“It’s a really exciting stage.
“Obviously they don’t know if it will last a life time, but it seems to be working and doing what it’s supposed to do.”
Emma decided to raise the profile of Fight for Sight even more by attending Royal Ascot for Ladies day in some hand tailored eye fascinators.
“It was one of my friends, Jane, who came up with the idea.
“We thought it would be quite nice to go and get noticed.
“It’s just to really raise the profile of the charity that we raised the money through.
“We are so pleased with them!”
Tommy is pleased about the research that has taken place and what this could mean for him.
Emma said: “He’s really happy. He’s really excited about it and he does realise that this is hopefully going to change his future, but I think you don’t want to keep going on about it.
“He helps massively with the fundraising and his friends are always doing stuff, and he’s positive about it.”
For more information or to find out how to donate please visit fightforsight.org.uk/tommysalisburyfund.