‘I knew Tommy would lose his sight’: Mum raises more than £700K to fund research into son’s rare eye condition

A mum has raised more than £700,000 to fund research into a rare, inherited eye condition which affects her family and threatens to steal her son’s sight. 

Emma Salisbury, 52, of Yorkland Avenue in Welling, launched the Tommy Salisbury Choroideremia Fund in 2005 when her son, Tommy Salisbury, now 23 but then aged four, was diagnosed with Choroideremia. 

Choroideremia is a rare, inherited retinal condition which affects one in 50,000 people. It causes a gradual loss of vision and there is currently no cure. 

Ms Sailsbury said: “When Tommy received a diagnosis of having Choroideremia, I felt like I couldn’t sit back and do nothing. 

“I thought, ‘This will gradually get worse for Tommy. I haven’t got time to sit around’.”

Emma and Tommy Salisbury at a fundraising disco (Picture: Emma Salisbury)

Choroideremia has impacted Ms Salisbury family over generations, causing her grandfather to become blind when she was a child.  

She said: “The condition had already taken my grandfather’s sight, my cousin had it, and I knew I might be a carrier too. I knew what was coming and that Tommy would eventually lose his sight.”

Since launching the Fund, Ms Salisbury, her family and their community of supporters have taken part in a number of fundraisers, including family discos, marathons and bike rides to raise money for vital research into the condition in the hope that Tommy’s sight can be saved. 

She said: “We live where we’ve grown up, so we have a whole community who know us, and Tommy’s Fund and I am so grateful to everyone who has supported us over the years. 

“It’s fantastic to think we have raised so much, but we’re not done yet. We’ll keep going until there is a treatment that will save Tommy’s sight and help others with the condition.”

So far, money raised by the Tommy Salisbury Choroideremia Fund has helped launch the world’s first clinical trial for the disease at Oxford Eye Hospital in 2014.

Emma and Tommy Salisbury with friends taking part in the London Half Marathon last year (Picture: Emma Salisbury)

It has also directly supported research into Choroideremia at Imperial College London.  

Ms Salisbury’s efforts were recognised nationally in 2012 when she was chosen as an Olympic Torchbearer. 

Tommy is currently enjoying a successful career as a barrister’s clerk, despite his sight condition.  

Ms Salisbury said: “Now Tommy is older, he’s not just cheering me on at events, he’s doing them himself. 

“Team Tommy, which is him and 15 others, will be running the London Landmarks Half Marathon on April 7, and then Tommy and six other members of Team Tommy will be running in the London Marathon a few weeks later on April 21. 

“He can’t wait, and I couldn’t be prouder of him.” 

The Tommy Salisbury Choroideremia Fund was originally launched with sight loss charity Fight for Sight. Earlier this year Fight for Sight merged with fellow sight loss charity Vision Foundation.  

For more information about the Tommy Salisbury Choroideremia Fund for Fight for Sight/Vision Foundation, visit: 

Pictured top: From left, Tommy Salisbury with his mum, Emma Salisbury (Picture: Emma Salisbury)

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