“It’s something so special that Alfie and Harrison can do together” – Alfie’s story

As parents, we all want our children to share a special bond with one another. It may be a joint love of football or a shared interest in drawing or crafts. But when one sibling is blind, finding a shared interest can be a huge challenge.

Kelly and her husband Tom were loving parents to two-year-old son Harrison when they welcomed their second son Alfie into the world. Kelly always hoped that her sons would be close but when Alfie was diagnosed with rare genetic disorder, Norrie Disease, she feared it would not happen at all.

“I really wanted my boys to have a special relationship but there was a point when I was worried if they would be able to,” she says.

As they already had a healthy two-year-old, Kelly and Tom noticed something about baby Alfie when he was only a week old. His eyes seemed dilated, and they would sometimes see a distinct white glow.

After several referrals, the couple ended up at Great Ormond Street Hospital (GOSH) where they received the devastating news that Alfie was blind. A formal diagnosis of Norrie Disease was eventually made which is known to only affect 40 families in the UK. The disease causes blindness and hearing problems and can also result in slow development, seizures, and autism – something Alfie has also been diagnosed with.

Because the condition is so rare, there was little information or support in the early days of Alfie’s diagnosis.  “We felt so alone”, says Kelly. “Although one lifeline was a support group on Facebook which became like a family. Those connections save your life.”

And it was through one of these connections on Facebook that pointed Kelly to Living Paintings and Kelly now credits the charity for giving her sons the chance to find a joint love and share a special bond.

“I first came across Living Paintings when Alfie was around two,” she says. “I must have read about another family using it on social media. From a very young age, Alfie loved listening to audio stories, and I remember clearly the first Living Paintings book we received – it was Spot the Dog by Eric Hill.”

For Kelly and the family, the Living Paintings books became so much more than story books for Alfie, they became something special for the two brothers to bond over.

“Harrison and Alfie can’t do a lot together, but this is something really special that they share,” says Kelly. “Harrison was four when we got our first delivery, and he was so excited to experience them with his little brother. He loved to show Alfie how to feel the raised pictures and braille and they both really enjoyed listening to the stories and following along together. I don’t know who was more excited when we would get a new delivery!”

Alfie is now nine and has been receiving and enjoying book deliveries every six weeks for the past seven years.

“Harrison still reads Alfie the stories,” says Kelly. “He’s 12 now but is first to open the box when it arrives and still gets really excited to share them with his little brother. I’m so glad we discovered the service when Alfie was so young as it’s made such a difference to his life and to his brother. As Alfie is autistic, he may not have taken to the books as he got older, but he’s so used to them now and they’re a huge part of his life.”

Having books be a part of her son’s life is something that was so important to Kelly, and she’s thrilled that Alfie took to them as well as he did.

“Autistic children don’t like to sit still for long but when we have one of his special books, Alfie becomes absorbed in it. He follows along with us by feeling the pictures and he loves to share the books with his friends and classmates,” she says.

“We really enjoy choosing the next lot of books – it’s usually one Alfie likes but we also like to choose books relating to topics he might be learning about in school. It’s really useful if his class is going on a trip to the library as it means he can bring one along and participate with everyone else. They enable him to explore on his own and there isn’t much that allows him to do that.”

Like most children, Alfie has favourite books and ones he returns to again and again.  “Julia Donaldson books are by far his favourite,” says Kelly. “We recently read Room on the Broom and I just loved watching him follow along with his hands. He could feel the witch’s hat, broom and cat and it brings the story to life for him.

He also loved My Monster and Me by Nadiya Hussain – it was a surprise book that we were sent to try, and he loved it. He goes back to his favourites but also likes to try something new now and then along with different types of stories.”

After Alfie’s diagnosis, Kelly joined forces with two other families to establish The Norrie Disease Foundation, a charity that promotes pioneering research into Norrie disease and provides vital support to families living with the condition.

“One of the first things I do when I meet a new family through The Norrie Foundation, is to introduce them to Living Paintings,” Kelly said. “I always send a link and explain how much the books have helped Alfie. The fantastic relationship he has with his brother is largely due to the Living Paintings books and I know they will be a great support to other families.”