Helping find a cure for little Matilda’s rare condition

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A Kenilworth Runner will battle for a brighter future for a four-year-old suffering with an eye condition so rare that a cure has not been researched.

Elizabeth Keell will run the London Marathon in the name of Matilda Henley who was diagnosed with Corneal Dystrophy at just 18-months-old.

The incredibly rare genetic condition causes clusters of cysts to develop and grow on the surface of her eyes.

Once they dry out they blister, leaving Matilda in unbearable pain and unable to see or even open her eyes until the sores have healed.

Matilda’s mother Claire said that her daughter must apply eye drops every hour and sleep with a gel mask to minimise overnight damage.

To prevent sores, she cannot play in sand, go swimming or go out in the summer heat.

Although there is no cure, Fight for Sight is one of the only charities working to find the faulty gene so that advanced treatments can be developed.

And in an “incredible” show of support for the charity’s work, family friend Elizabeth is pulling in donations alongside her 26-mile run.

Claire explained: “Matilda is really good, she knows she has special eyes and she just gets on with it with a smile.

“When it is bad she is in terrible pain and cannot open her eyes for days on end.

“The thought of treatment being developed for when she is older gives us a lot of hope.

“But just to know there are people around to help is fantastic and it means the world to have Elizabeth’s support.

Although Matilda’s overall vision is fine at the moment there is no way to know how it will be affected in the future.

Claire and her husband Julian have been told there is a chance their two-year-old son Austin is also carrying the faulty gene. If so, cysts could develop any time.

Elizabeth, who teaches history at Aylesford School, first got involved with the family and fundraising when her daughter Poppy befriended Matilda at Thorns school.

And as the 34-year-old suffers from a different type of distorted vision, she is keen to do all she can to do her bit.

“Matilda is only four and she is an absolute star - she goes through all her treatment and just gets on with it,” said Elizabeth.

“I am just doing my little bit to help her one day hopefully have a better experience.”

In what will be her first marathon, the runner has already raised £1,600 to be split between the charity and the RNLI in memory of her father.

To donate, or find out more, visit