Fight for Sight supporter, Claire Henley, whose daughter Matilda was diagnosed with corneal dystrophy aged 18-months, shares her story
12 May 2017
Becoming a parent for the first time can be challenging at the best of times, but when your child is diagnosed with a sight-threatening condition, your world changes forever.
My husband and I first noticed that something wasn’t quite right when Matilda was 18-months-old – she would often wake during the night screaming. This would continue for hours. She would shut her eyes for lengthy periods and we would have to sit in complete darkness. At one point the doctor thought this could be linked to a behavioural problem.
Over Christmas 2010 the situation came to a head – Matilda appeared to be in excruciating pain and nothing could settle her and we felt we had no option but to rush her to our local A&E department. To our surprise, she was diagnosed with a large scratch to her eye, and we felt relieved that we had a reason for her distress.
However, this turned out to be the start, rather than the end, of our journey. The pain came back and Matilda’s behaviour was even more erratic. As parents, we became desperate. To try and get her to sleep we would spend hours driving in our car to try and calm her. This situation went on for another year before she was eventually diagnosed with a corneal dystrophy in 2011.
"Our hope is that one day a treatment or cure will be discovered through the research that is funded by Fight for Sight so that Matilda, and other sufferers like her, will have the prospect of a pain-free future"
What this means is that the top layer of Matilda’s eyes are covered in tiny micro cysts and if these dry out and burst, it causes her excruciating pain.
Over the last few years, Matilda’s consultants have tried a variety of different treatment options in the hope of preventing the erosions occurring. The treatments have included alcohol delamination, bandage contact lenses, punctual plugs, and many different lubricating eye drops and ointments.
Unfortunately, none of these interventions have helped and she continues to have corneal erosions, although thankfully they are less frequent now. That’s why we are keen to support vital eye research through the UK’s leading eye research charity Fight for Sight – it is the only charity delivering groundbreaking research that could make a difference to Matilda’s future.
Working with Fight for Sight has given us the opportunity to speak with researchers at the University of Ulster who are investigating the causes of the condition. 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.
We’ve also been involved with Professor Alison Hardcastle’s Fight for Sight-funded research project at University College London and Moorfields Eye Hospital.
The consultants are still unsure what form of corneal dystrophy Matilda has – although it’s suspected that it is Meesmann’s, which is extremely rare.
The condition has impacted on Matilda’s life, as well as ours as a family. Even the environment can affect her eyes, meaning that when it’s windy, bright sunshine or in snow, Matilda will have to wear sunglasses – we are probably the only family in the country that prays for a dry and dull day.
Through Fight for Sight we have been able to establish a specific fund to help support research into corneal dystrophy and have hosted a number of fundraising activities to help push forward research in this area. Yet there is so much more to do.
Our hope is that one day a treatment or cure will be discovered through the research that is funded by Fight for Sight so that Matilda, and other sufferers like her, will have the prospect of a pain-free future.
To learn more about Team Tilda, visit Fight for Sight’s website.