Matilda's fight for sight

23 June 15

written by:

Heather Fanning

(more articles)

Matilda's story living with corneal dystrophy

Matilda Henley has been having problems with her sight since she was 18 months old.

Matilda’s mum, Claire, first noticed that something was wrong, as Matilda would wake up screaming during the night. This would continue for hours, she would also shut her eyes for lengthy periods and her behaviour was really out of character.

The situation came to a head in Christmas 2010 when Matilda was taken to A&E. Claire describes this as the worst period ever, as she had to witness Matilda in so much pain and felt helpless. Matilda was diagnosed with a large scratch on her eye.

In 2011 she was diagnosed with a corneal dystrophy. This affects the top layer of the eye and it can be covered in tiny micro cysts and if these dry out and burst it causes excruciating pain for Matilda.

Matilda's consultants have tried a variety of different treatment options in the hope of preventing the erosions occurring. These treatments have included alcohol delamination, bandage contact lenses, punctual plugs and many different lubricating eye drops and ointments.

Matilda continues to have corneal erosions, though these are less frequent. Matilda’s condition is managed through hourly lubricating eye drops during the day and a thick Vaseline like ointment is used at night.

The environment surrounding Matilda is closely monitored as this can have an impact on her eyes. For instance wind, bright sunshine, dust, heat and water can all have a damaging effect. Matilda often wears sunglasses throughout the year come rain or shine.

Consultants are still unsure what form of corneal dystrophy she has – although it’s suspected that it is Meesmann’s which is extremely rare.

Through speaking with the charity the family has been in touch with a researcher at University of Ulster. Their research project is looking at silencing the faulty gene that causes Matilda’s condition and through DNA testing they are trying to identify this gene.

“Claire said: This will have a massive impact on us, because we have a son as well, we hope that they can identify what the problem is, so we can see whether he will inherited the condition too.”

The family has also had further genetic tests at University College London and Moorfields Eye Hospital through Fight for Sight funded researcher, Professor Alison Hardcastle.

Corneal dystrophy

What is it?

Corneal dystrophy is a group of rare inherited eye conditions that affect the cornea – the clear front surface of the eye – and can cause sight loss. The group includes Fuchs corneal dystrophy and Meesmann Corneal Dystrophy.

Find out more