Team Tilda

Matilda's parents Claire and Julian Henley set up Matilda's fund, Team Tilda. This is their story.

Matilda was born with a corneal dystrophy, causing severe pain and impaired vision.

Devastated by seeing Tilda in pain with limited vision, parents Claire and Mark set up the ‘Team Tilda’ family fund to raise money for research into corneal dystrophies. They hope that one day research will find a treatment for Matilda’s condition, which severely impacts her quality of life.

Corneal dystrophies are a group of genetic, often progressive eye disorders in which abnormal material often accumulates in the cornea – the clear outer layer of the eye. While some corneal dystrophies do not have symptoms; in others they may cause significant visual impairment.

Matilda was first identified with problems when she was 18 months’ old when she began to experience excruciating pain. Her corneal dystrophy means her eyes are covered in tiny microcysts, which can dry out and burst, causing extreme pain and blurred vision. Matilda's consultants have tried various treatment options with the aim of preventing the microcysts from bursting, though none so far have been successful. She currently manages with lubricating eye drops that must be applied hourly during the day, thick ointments at night and bandage contact lenses. Matilda’s condition severely impacts her quality of life.

For Tilda’s parents, it is incredibly frustrating not being able to solve their child’s problems.

Matilda's mother, Claire, says: “Seeing Matilda in pain and distress and not being able to do anything about it is agonising. As Matilda's parents, we feel we need to do something and raise money for research into a treatment that would make Tilda’s life more comfortable. By raising awareness of eye conditions and the need for Fight for Sight’s research, we feel we are helping Matilda. Money raised through our Team Tilda will go directly towards research into corneal dystrophies.”

The Henley family hopes that with the support of others, their fundraising will one day help to find a cure.

If you would like to fundraise for Team Tilda, contact: teamtilda@yahoo.com

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