Toby’s story
31 May 2024
Toby was born with an eye condition that could lead to sight loss. Toby’s mother, Jessica shares his journey and how they are giving back to Moorfields!
When Toby was born, everything seemed fine. After a couple of weeks, his parents noticed that he couldn’t open his eyes outside and that they were always watering.
His mother took him to the GP, who explained it’s likely that he has blocked tear ducts, which is a common issue in babies and often gets resolved on its own.
A month passed and Toby’s eyes did not show any signs of improvement. Despite trying baby sunglasses, his eyes continued to water.
The diagnosis
One day, Toby’s mother noticed that the pupil in his right eye was misshapen, like a rugby ball, and not in the centre of his eye.
Toby’s GP advised her to visit the Royal United Hospital in Bath. During their visit the following week, a doctor suggested that Toby might have glaucoma and needed to see a specialist immediately.
What is glaucoma?
Learn more
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 ‘seconday 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
people 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.
The next day, they went to Great Ormond Street Hospital, where Toby was officially diagnosed. The pressure in his eyes was very high, and he needed surgery within the next few weeks.
After Toby’s operation, his doctor, Mr Brookes, said that Toby was born with Axenfeld-Rieger syndrome, which caused his glaucoma.
What is Axenfield-Rieger syndrome?
Learn more
Axenfeld-Rieger syndrome is a group of disorders that mainly affects the development of the eye, particularly the structure of the cornea and iris. This condition is caused by genetic mutations, which are changes in the sequences of our DNA. About 50% of people with this syndrome develop glaucoma, a condition that increases pressure inside of the eye, and may cause vision loss or blindness.
Living with glaucoma
The first operation temporarily lowered the pressure in Toby’s eye, but he remained highly sensitive to light, which meant his eyes continued to water.
Toby’s parents always kept the blinds and curtains closed at home. When they went out, Toby always wore sunglasses and used a shade to block out any light in his pram and buggy.
Toby’s sensitivity to light has made it difficult for him to attend events such as discos or carnivals as he got older.
They had to install dimmer switches in all the rooms at home because Toby could not tolerate bright lights in the morning for an extended period of time.
Further diagnosis
Toby has lost vision in his right eye and has only 20-30% vision in his left eye.
He has recently been diagnosed with nystagmus and cataracts and will require further surgery.
What is nystagmus?
Learn more
Nystagmus is when your eyes move rapidly by themselves. The movement can be side to side, up and down or in a circular motion. Nystagmus comes from the Greek word “nustagmos” which was used to describe the wobbly head movements of someone who was either sleepy or who had drunk too much!
Experience at Moorfields
Toby, who is now 10 years old, has undergone 27 operations under general anaesthetic at Moorfields Eye Hospital.
He has undergone laser surgery and had shunts implanted. Regular maintenance has been performed on the shunts, including flushing and extension upkeep.
The staff at Moorfields are amazing. Mr Brookes, Toby’s doctor is our hero. He is always there for Toby in his calm and caring way - he performs the most amazing procedures. His team, the doctors, nurses are all outstanding in their care.
Jessica Robbins
The staff at Moorfields have got to know Toby very well over the years and take time to make Toby as comfortable as possible.
His parents are grateful for the play team, especially Flossy, who has made the operations smoother for the whole family.
Toby is undergoing ongoing treatment for a condition that has no cure at the moment. He has to spend a lot of time in the hospital, four hours away from home.
Despite the distance, Toby’s mother is incredibly grateful that he is receiving treatment at Moorfields from Mr Brookes and his team.
Toby would have been completely blind when he was a baby had Moorfields not got involved.
Jessica Robbins
Advice to other parents
Jessica’s guidance to others going through a similar situation is to stay strong and assures them they will get through it.
Although she recognises the difficulty of the operations, she encourages other parents to focus on the reason behind them: to fight for sight as long as possible.
Toby is so positive about everything. He’s taught me a lot, he’s incredibly strong, my superhero, and I could not be more proud of him.
Jessica Robbins
Giving back to Moorfields
Last year, Toby and his family raised over £2,000 for Moorfields by participating in the virtual My Eye to Eye 2023 event. Toby and his dad cycled 10 miles while his mother, Jessica ran 5 miles.
Next March 2025, Jessica will run the Bath Half Marathon to raise money for Moorfields. She wants to help fund research to save sight and hopefully find a cure.
