Sending my son to nursery in odd shoes helped me realise I was losing my sight

Family mornings can often be frantic as everyone clambers to get out of the door on time, but for dad-of-two Andy Johnson, it was a mistake he made getting his son Oaklen ready for nursery that made him realise his life was going to change.

Andy was born with retinal dystrophy, an inherited condition causing progressive vision loss, which eventually leads to tunnel vision and potentially blindness.

He lived with tunnel vision for most of his life, but first realised his central sight was fading when he accidentally sent Oaklen, now five, to nursery wearing odd shoes in 2024.

"A different style and completely different colours," Andy chuckled - his wife Danni only spotted the faux pas when she got to the school gates.

Andy and Danni described his eye condition as "never being a thing" and never previously let it affect them "and then it just hit us".

"When my eyesight started to deteriorate, I stopped doing things," Andy said.

The 35-year-old was told he had avoidance anxiety: "I wouldn't cross a road, I wouldn't take the kids to school."

"We hit a point where we had to do something," said Danni, 31.

Andy, from Pwllhelli, Gwynedd, said his eyesight had been stable for most of his life, but in January 2024 he was told it had deteriorated.

"We're sat in the waiting room and we got called in and I just said 'I can't see out of my right eye anymore' and in a way they were a bit like, 'oh you knew this was going to happen anyway'.

"It was a bit blunt."

Despite it being a genetic condition, Andy's parents were just carriers of the condition, so he had never been around someone who had dealt with eyesight loss.

Andy, who is registered blind, said there was nothing doctors could do and, because of his prior diagnosis, there was little support available to them.

"I didn't have anyone to speak to about it."

"When you leave the hospital, you're on your own, and that's the scary thing and that's what I want to change," Danni added.

"All these questions go through your head, the kids getting married, will you [Andy] see that... but you can't think about it too much as you will spiral," said Danni.

The couple, who run a water sports centre, said their business roles "all changed" as Andy moved into a managerial role instead of teaching, while Danni has gained her accreditation to drive boats.

Andy said it was a big change for the whole family, with Danni adding that they were told it was akin to a grieving process "as you're losing something".

But adjusting to reality was a bitter pill for Andy to swallow.

Danni said she had to push him to regain some independence for the sake of their family: "Being completely and brutally honest, something had to change as it was going to ruin our marriage."

Things improved once Andy took the leap to have cane training, followed by getting his guide dog Pearlie.

Andy now continues to enjoy water sports and their business runs accessible training sessions for those with sight loss - something Andy is passionate about.

Andy admitted his mental health has taken the biggest toll, while his sons have also learned to adapt to life with Andy's disability.

For their eldest son Finley, 9, who was used to seeing his dad driving the boats and dropping him to school, it was a massive shift.

"They've actually said it's a form of trauma," said Danni.

The couple described their children as being "amazing" and Andy said they "hold my hand without thinking about it".

"I just think sight loss is underestimated," said Danni, as the family make considerations for Andy's condition every second of every day.

Something as simple as going out for lunch requires extra preparation, from mapping out the restaurant space to selecting what Andy will have to eat before they arrive.

"We are a normal family, but we do have to peddle a lot harder than everyone else to achieve the same," said Danni.

"People don't realise how lucky they are just to go and do the school run and then pop to the shop," Andy added.

"The biggest thing for me has always been my driving, I love cars and my freedom.

"I'd love to be able to be able to go and do whatever I wanted... with work, especially, I would love to still be teaching water sports and just do things without worrying about it."

"But we want to show people you can still have a family and a fulfilled life," said Danni.

"But it's a real hard balance."

The couple are using their story to help other people, posting day-in-the-life videos to their Instagram account to show how they navigate family life with sight loss.

They have also used their story to help raise money for Guide Dogs UK by challenging schools and nurseries to take part in an odd shoes day in October 2024.

"It sounds so cheesy but it's taught me the true meaning of life and what we're all here for," said Danni.

"It's made me so much more aware of other people with disabilities, it makes the kids more aware," added Andy.

"We very much live for now, which isn't always the right choice," they laughed, saying they had just bought their dream car, but it was "bittersweet" as Andy can't drive it.

"We just try and make the most of every moment. Let's go to the beach after school, let's just make time for it."