A mum’s story about congenital glaucoma

Debbie Maguire from Northern Ireland is holding a Summer Ball and will donate funds raised on the night to Moorfields Eye Charity as she and her family are very grateful to everyone at Moorfields Eye Hospital for taking such great care of her son Luí. The ball is in celebration of Debbie’s dance school winning 12 World Globes at the World Championships in Dublin earlier this year. She shares her story about Luí’s condition and what it is like to have a young son with congenital glaucoma.

“We are a family of four: myself, Eamonn and our two boys Charlie & Luí. Eamonn is a school teacher and we both run a large Irish Dancing School in our hometown Newry, N. Ireland. Life is extremely busy!

I never forget when I first found out about congenital glaucoma. We were always suspicious that Luí’s right eye was much bigger than the other and watery. When we were referred to our local hospital they told us he would need surgery straight away as he had congenital glaucoma.

We never fully understood the extent of his condition or how complex this disease was.

Luí’s first operation was at 16 months old on 7 Nov 2016 at Belfast Royal Infirmary. It was on the right eye and unfortunately was unsuccessful. He struggled and fought every time the never ending drops.. It was quite draining on him and the rest of the family. In December 2016, Luí came to Moorfields and Professor Sir Peng Khaw put in a tube to drain some of the fluid in his eye which was causing the build-up of pressure. A subsequent operation followed in April 2017.

We thought we would never see the end of travelling back and forward to London. However, we are the lucky ones and so grateful, as we have met other families who have to travel even further afield for treatment. Moorfields has provided excellent care and attention to Luí, and Professor Sir Peng Khaw has been amazing. He always has time to listen and answer any queries we have had.

Luí is doing really well at the moment. He starts preschool in September, and he is mad into cars, very sociable, loves music and imitating his big brother Charlie!

Below is a story that Debbie wrote to her son;

 

Twinkle Twinkle

At 16 months you finally walked,

You're little face bright with pride.

We thought you'd wait another while,

But you are resilience personified.

A long tough week they prodded & probed, oh your sensitive little wide eyes, you wriggled and writhed, laughed and cried, you met the not so nice butterflies.

Daddy took you up, while I waited with rabbit, tense, impatient for you to return. He left you limp in the surgeons hands, his throat felt that aching burn.

A few hours past, we held you once more, all confused, in pain, unaware. Suddenly, the start of a life long journey, more surgeries, more pain, more prayer.

To London we went, with our little warrior, neatly prepped for battle number two.

Such a rare disease, yet, our minds more at ease, when we met the amazing care crew.

There were families like us who had stories to tell. Their frustration, exhaustion, real fears. Children worse than you, their eyes no more blue, just makes ours overflow with tears.

Life gives us crosses some lighter than others, most heavy with troubles galore. Yet it's how we strengthen our bodies, our minds, our souls, to ease the weight and feel them less than before.

Remembering tomorrow is our own to hold and to believe, hope and faith really do shine bright.

The relentlessness of the human spirit and most of all love, the perfect recipe to give darkness true light.

Love Mummy x

Luí and his Dad Eamonn, with Professor Sir Peng Khaw