Maisy’s story

To other parents whose child has been newly diagnosed with glaucoma, my advice is to take each day as it comes. Try not to worry too much about the future – children are so resilient.

Maisy was diagnosed at birth with a unilateral congenital cataract and Persistent hyperplastic primary vitreous (PHPV). At just four weeks old, she underwent her first surgery to remove the cataract.

When Maisy was four, she was diagnosed with glaucoma following complications from her cataract and PHPV. We always knew it was a possibility she’d develop glaucoma due to her eye conditions, but when the diagnosis came, it was disappointing – she’d already had so many treatments.

Maisy’s eye pressures have been monitored since she was two weeks old. They remained stable until she turned four, when a routine check-up revealed an increase. We knew her pressures needed to be stable to reduce the risk of further complications. Due to the nature of Maisy’s conditions, she can have high pressures without experiencing any pain or symptoms. In fact, her pressures have reached the 50s without any obvious signs.

Her treatment initially involved three different eye drops throughout the day, which managed her pressures well. However, two years ago, the drops stopped working, and she was referred to a specialist in Manchester. She has since had a tube inserted into her eye to help drain the fluids. The past two years has been tough, with many complications related to the tube. We’ve had a lot to learn about spotting signs of issues. The challenge we’re facing now is that the glaucoma is causing Maisy’s pressures to spike.

Thankfully, we’ve had incredible support from the doctors, specialists, and nurses at Alder Hey and Manchester. The care, patience and time they give to help parents and children understand what’s happening is invaluable.

Maisy is an ambassador for Alder Hey Children’s Hospital, and as a family, we’ve raised about £13,000 so far.

She’s had 15 surgeries to date and is an incredibly intelligent young lady who inspires everyone she meets. To other parents whose child has been newly diagnosed with glaucoma, my advice is to take each day as it comes. Try not to worry too much about the future – children are so resilient.

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