“It was a ‘woah’ moment when Jasper could feel all the details that he couldn’t see” – Jasper and Lauren’s story

Giving back to a charity you have a personal connection with is something that many of us aspire to do. Lauren Looker-Hutchins is thrilled to be able to utilise her artistic skills to help create colourful raised tactile books that will go on to inspire visually impaired children, the way they have inspired her little boy.

Lauren’s 2-year-old son Jasper was born with oculocutaneous albinism type 1 which has left him with a vision impairment.

“When Jasper was born, he had this gorgeous white, blond hair and we didn’t think much of it as both me and his dad have fair hair,” she said.

However, his parents slowly noticed he had nystagmus – a repetitive and involuntary movement – and had it confirmed by the health visitor at the 8-week check.

“Even after we were referred, it wasn’t a straightforward diagnosis,” Lauren says. “We were first referred to a local hospital, but we were told they did not believe he had albinism when I mentioned the possibility to them. Reluctantly they did agree to genetic testing”). It was through my own research and a move to a different hospital that finally got us the official diagnosis. The new hospital immediately noticed diagnostic symptoms which confirmed albinism. Jasper was just over one when we received the genetics results, which determined the type of albinism he had – OCA1.”

Jasper’s albinism has resulted in him being severely sight impaired. This is mainly due to his vision varying day-to-day and being affected by so many different things such as how bright it is, if he’s tired, excited or upset among other things.

“As he started to move around more, we noticed his lack of depth perception,” says Lauren. “He would use his toys as a cane to help him move around. We were always told he was too young for a cane but when he tried a children’s cane at a guide dog event, he really took to it and so we managed to get him one just before his second birthday.”

When Jasper was first diagnosed, Lauren and Jasper’s Dad, Liam, did not know the level of Jasper’s vision, but as he started to communicate more, he can tell his parents what he can see and what he can’t. It won’t be until Jasper is four or five years old that they will have a much stronger indication on his sight limitations. At that point, Jasper will be able to explain in more detail and can take part in more sight tests.

“We’re in the process of having Jasper registered as severely sight impaired. I like to describe his vision like an old TV, you can tell what things are but it’s not in HD and you can’t see the details – that’s how we think Jasper sees the world.”

One thing that Lauren and Liam were hoping for Jasper was a love of books. “Liam would always read to my tummy when I was pregnant and so we both hoped that Jasper would love books from the start. However, he just wasn’t interested.”

The family discovered Living Paintings through various support groups for children with albinism as well as being introduced to the books through a sensory session with his vision teacher.

“Jasper had only seen flat books or books that just had the textured sections and so as soon as he felt a Living Paintings book, he was like whoa! Suddenly, he could touch the pictures and feel details that he couldn’t see. He loved the books immediately.

His first book was one of the Spot books by Eric Hill. He really liked it and got up close to properly examine the tactile pictures. He was around 8 months old when he got his first book, but we could tell this would be a long-time love.”

As Jasper has become more familiar with the Living Paintings books, he has a few he goes back to again and again. “His favourites are still the Spot books,” says Lauren. “He loves animals and now is really interested in birds. He can hear them when we’re walking and always looks up to try and see them flying. Unfortunately, we think he can only likely see a blurry blob in the sky, but we recently had Spot Goes to the Farm in our Living Paintings delivery and it was wonderful to see Jasper really examine the beak and feathers of the hen and chick and for him to finally be able to visualise what a bird might look like.”

And it was during one of these special moments for Jasper that Lauren decided she wanted to help other children unlock their favourite things through raised pictures.

“I’ve always been arty and – with it being so personal to us – it seemed like the perfect opportunity to volunteer and give back. I’ve seen what a huge difference it’s made to Jasper, and I love being able to contribute to future books other partially sighted and blind children can enjoy.”

Lauren has been volunteering with Living Paintings for over a year now and brings the raised pictures to life by painting them in colour. “I’ve started to share the painting process on the Instagram account we have to share Jasper’s story (@jaspersjourney_withalbinism) as so many parents would ask me what book is coming next and what I’m working on – it’s so lovely to see the impact they have on the community.”

Despite Jasper’s limitations with his sight and a strong sensitivity to the sun, his future seems bright. “Jasper is currently on track with his milestones – some reached more readily, and some requiring a lot of work and determination from Jasper and me as his Mum – which is amazing,” says Lauren. “His memory always blows me away as he can remember whole songs – and not just nursery rhymes but songs from the 80s.

It’s like his memory is compensating for his lack of sight. There will be challenges in the future and a few bumps in the road to keep meeting development milestones and things like school when the time comes, but I’ve no doubt with Jasper’s strong will, and support from us as his parents, the rest of his family and the professionals involved, that he will continue to thrive and make us proud on a daily basis.”

Lauren is aware that many children who use Living Paintings services may have more limited sight than Jasper, may be losing their sight as they get older, or may have additional challenges to overcome, but that all the parents and children accessing the charity share the want for there to be accessible reading for all and that has inspired her even more to donate her time to the charity and spread the word.

“Living Paintings books have really inspired Jasper’s reading and engaged him, and it’s ignited a love in books which is something we are delighted about,” she says.

“I’m involved in various support groups with parents of visually impaired children and the first thing I always recommend to them is Living Paintings as it’s such a positive service. Many of these children desperately need some fun and positivity after sometimes a scary diagnosis and so Living Paintings is so important. I’m glad I can be a part of it.”