Up until three months ago Ashley Gover was like any other 11-year-old until he was diagnosed with a rare life changing condition that has caused him to lose his sight.

The John of Gaunt pupil loved playing football with his friends, supporting Manchester United, and playing games on his Xbox and iPad mini.

But his family, of Francis Street in Trowbridge, were rocked by the news that Ashley had Leber’s optic neuropathy, a condition that slowly takes away the sight.

He is now registered severely visually impaired and has lost his central vision. His peripheral vision is between 10-20 per cent, but in a matter of weeks, months or years, he could lose his full sight.

Ashley, who now needs a white stick to walk to school with his friends, said: “Everything is blurry. Some things look black instead of colour and I see lots of fuzzy coloured blobs.

“I feel scared sometimes and sad about not being able to drive a car when I am older.”

His mother, Louise, 34, said: “He was fine at his last eye test in March but a few weeks later he was complaining that his eyes were blurry.”

Mrs Gover, a senior carer at Staverton House, was concerned as her half brother had been diagnosed in 2010 with Leber’s optic neuropathy, a hereditary disease, which resulted in her being tested and diagnosed as being a carrier.

She added: “I was worried but didn’t think he would have it as he is so young and it is very rare. Only one in 80,000 people get it.”

She took him back to Specsavers in Trowbridge for an optic nerve scan and he was referred to Royal United Hospital in Bath, then onto Bristol Eye Hospital, where a diagnosis came after more tests.

Ashley’s dad, Daniel, said: “He has been through a lot. The biggest stress was fighting for a diagnosis but since then the support has been overwhelming and we would like to thank our friends and family for their support.”

Ashley has two sisters, Jaymie, 12, and Bethany, 6, and Mrs Gover said: “It has had a big affect on the girls, seeing him struggle. Physically he is fantastic, but emotionally he is angry and frustrated. It is pretty certain he is going to get worse than he is now.”

Yasmin Andrews, from Specsavers in Trowbridge, accompanied the family to Bristol Eye Hospital and has organised cake sales, a raffle and a boot fair, which has raised over £700 to go towards equipment to aid Ashley’s sight.

Ashley is learning touch typing at school and will soon learn brail. He will benefit from equipment that talks to him, such as a watch, phone and a large iPad that doesn’t strain his eyes.

School friends and teachers at John of Gaunt School have been working together to provide the best learning experience for Ashley.

Mum Louise said: “His friends have been brilliant, especially Josh Thorn, who helped Ashley during the transition period from Bellefield. Ashley walks to school with a group of friends who tell him when he can cross the road and they guide him to his classes.”

The school has given Ashley a laptop to download textbooks and receive class notes he can zoom in on. Attached to the laptop is a device to help him adjust fonts, colours and backgrounds and he is helped with audio books.

The school has also swapped the white football for an orange one, for Ashley to continue his love of the sport.

Collette Miyagawa, deputy of SENCo (special educational needs coordinators) at the school, said: “He is really bright with a great sense of humour and very tech savvy. We are learning alongside him and making sure he has everything he needs.”

Mrs Gover, who aims to run the Bath half marathon in March, said: “It feels disheartening that there is no research going on in the UK because it such a rare disease. We would really like to raise awareness of the disease and raise money for the RNIB as they provide a lot of the equipment.”

 

Factfile:

  • Leber’s Optic Neuropathy, also known as Leber’s Hereditary Optic Neuropathy or Leber’s Optic Atrophy, is a form of vision loss inherited from the maternal side.
  • Symptoms are vision loss, cloudiness and blurriness in one eye or simultaneously in both.
  • It affects central vision, needed for detailed tasks such as reading, driving, and recognising faces.
  • It affects four times as many males than females.
  • Research is limited and there is currently no approved treatment.
  • More at: www.patient.co.uk/doctor/Leber's-Optic-Atrophy.htm

www.lhon.org
www.ghr.nlm.nih.gov/condition/
leber-hereditary-optic-neuropathy