Enzo’s story
8 November 2024
When Enzo was born, he was diagnosed with anterior dysgenesis, secondary glaucoma and phthisis bulbi in his left eye, eventually needing an operation. Enzo’s father, Gordon, shares their journey with Moorfields and how the family is giving back.
At just a few hours old, Enzo was transferred to a specialised hospital for further tests by experienced eye specialists.
What is anterior segment dysgenesis?
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Anterior segment dysgenesis (ASD) refers to a spectrum of disorders that affect the development of the front of the eye (the anterior segment), which includes the cornea, iris, ciliary body, and lens.
Glaucoma develops in approximately 60% of people with ASD, during infancy or much later.
What is glaucoma?
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Glaucoma is an eye condition where damage to the optic nerve causes sight loss. It is usually caused by the pressure inside your eye rising too high.
Your eye is full of fluid, which helps it to keep its shape and function properly. If too much fluid builds up inside the eye, the pressure rises and squeezes the optic nerve at the back of the eye.
This can cause damage to your optic nerve - a bundle of over a million nerve fibres that carry signals between your eye and your brain.
Pressure might build up in the eye when:
- fluid is stopped from draining away
- extra fluid is produced after an eye injury or infection - this is called ‘secondary glaucoma’
- there is an abnormality in the shape of the eye in children - this is called ‘congenital glaucoma’
- Glaucoma tends to develop slowly over many years. As there is currently no cure for glaucoma, treatment focuses on early diagnosis, careful monitoring and regular treatment to help prevent further sight loss
9 in 10
diagnosed with glaucoma today who get the treatment they need will retain useful sight for the rest of their lives
It is not currently possible to repair the optic nerve once it has been damaged, so any vision lost to glaucoma cannot be recovered. If left untreated, glaucoma can lead to blindness.
There are usually no symptoms of a rising pressure in the eye until sight loss occurs, so regular eye tests are the best way to help spot the condition early.
What is phthisis bulbi?
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Phthisis bulbi is an end-stage eye condition characterised by severe eye damage, so that it can appear shrunken or collapsed. It can be a response to eye disease and the inflammation, scarring or disorganisation of the eye it may cause, and treatment or surgery is necessary.
Shortly after, at only a few months old, Enzo was scheduled for surgery. Enzo underwent surgery to drain the fluid from his eye, which was successful in reducing the bulging, but unfortunately left him with limited vision.
Frequent appointments at Great Ormond Street Hospital (GOSH) and Moorfields Eye Hospital followed, where Enzo was introduced to the Ophthalmology department.
Enzo’s treatment
It was at Moorfields Eye Hospital where Enzo received his first of many hand-painted prosthetic eye caps. These are designed to ensure Enzo’s facial structural development is not compromised as he grows older and give him the chance of a normal life.
Despite the risks associated with general anaesthetic at such a young age, Enzo’s response to treatment was overwhelmingly positive.
Every procedure was handled with care, resulting in a painless and straightforward experience for Enzo.
Reflections and advice for other parents
Looking back, Enzo’s parents would tell their past selves that it’s okay to cry and to fully embrace the emotions that come with a challenging diagnosis.
They advocate speaking openly about the experience, not blaming oneself, and never feeling guilty for moments of helplessness.
My advice to any parent is to do the same, with hope and know that children are so resilient, bold, brave and courageous. Children indirectly and effortlessly inspire strength, hope and happiness more than you could ever imagine.
Gordon Healis
Moorfields impact and giving back
Moorfields Eye Hospital has been a beacon of hope for Enzo’s family.
The expertise, the advice, the support and exceptional duty of care have made all the difference to us. Every appointment, eye test, and procedure has been handled with attention to detail and professionalism.
Gordon Healis
Inspired by the outstanding care Enzo received, his family felt compelled to give back.
In 2023 Enzo’s father, Gordon, took on ‘Endure 24’ while fundraising for Moorfields Eye Charity for his 40th birthday.
Endure 24 is the UK’s biggest 24 hour trail race, where you run against the clock to see how many laps you can complete before the time runs out.
Gordon successfully raised over £800!
The experience was exhilarating, and he decided to take on the challenge again the following year.
This time he took on the challenge alongside 10 of his colleagues from Optoma UK. As a team, they collectively raised over £1500!
Enzo is very grateful and shared this video:
Enzo’s mother also got involved in fundraising, running 100 miles in a month for GOSH, raising £1200.
Join them supporting Moorfields Eye Charity
Enzo’s story is one of courage, resilience, and the support of the team at Moorfields. Through their fundraising efforts, Enzo’s family hopes to give back and support other families facing similar challenges.
Join them in making a difference and supporting Moorfields Eye Charity.