“Living Paintings has unlocked her imagination” – Emily’s story

When a video of 7-year-old Emily feeling the characters of her favourite book with her hands and reciting the names was posted online, it warmed the hearts of all who saw it. Especially for her caregivers, Val and Amie, who never dreamed that she might reach such a milestone or even make it past babyhood.

Val, Amie and Emily are the perfect example of a modern family, and their unit is something they created. Amie says, “We made the family that Emily needed, and we couldn’t be closer.”
Emily was born in March 2017 with a serious heart condition, kidney problems and is completely blind. At a day old, she was rushed to Great Ormond Street Hospital and doctors weren’t sure she’d make it past 48 hours. Unfortunately, Emily was too poorly for any further treatment and was transferred to a local hospital to meet some family as she wasn’t expected to live very long.

Aunty and niece, Val and Amie, began to visit baby Emily and fell in love with her., Emily was born to Val’s cousin who was unable to take her home so Val offered to care for Emily when she was around five months old to make her final weeks loving and comfortable.

“She wasn’t expected to survive birth. She had open heart surgery at a day old and a second heart surgery at around 10 days old. Nobody expected her to live,” says Amie. “We met her when she was around three months old. We were told she had 48 hours to live so she was brought to a local hospital. She was completely alone and Val and I felt so guilty leaving her. The social services eventually got involved and Val volunteered to take her home for, what we thought, was her final weeks or even days.”

However, Emily surprised everyone and despite her serious and terminal condition, she continued to grow and live.

“Her heart condition was as severe as it could be and a transplant wasn’t an option due to major issues with her kidneys. But just when we thought that her time was up, she plateaued and kept growing and growing – she’s entirely tube fed but her body was sustaining growth and getting stronger,” says Val.

During this time, the trio became a real family unit and they enjoyed spending time and making memories together.

“Val is Emily’s legal guardian and so she calls her Mamma. She calls me ‘Amie Instead’ which we all find really funny,” says Amie. “We live close to each other and essentially co-parent.”

For two years, Emily continued to grow and so Great Ormond Street decided to review her situation and, along with various medical teams from across the country, assessed her and decided that she was ready for a major ‘do or die’ operation.

Val made the difficult decision to go ahead with the risky surgery in the hope that it might save the little girl.

“We knew she couldn’t last like that for much longer so it was either try and fix it or she dies,” says Val. “Even though we knew it was her only chance, it was still a really hard decision especially when we had to fill out the risk forms. We knew there was a chance she wouldn’t make it.”

Thankfully, the surgery went well. Emily seemed to be recovering until she had a cardiac arrest completely out of the blue which meant she was in critical condition once more.

“Emily was basically put onto ECMO, the ‘last resort’ heart and lung machine as she was so critical,” says Val. “It was such a shock as a cardiac arrest after corrective surgery is so rare, the doctors didn’t even mention it. Luckily, she had brain activity and so she was given further corrective surgery and three weeks later was back at home – as if it never happened!”

Since her recovery from the surgery, Emily has gone from strength to strength and is no longer classed as ‘terminal’ which is a huge relief to her family.

“Our determined and bossy little girl is just amazing. She’s now classed as having a ‘life limiting’ illness which is a huge step up from terminal. The surgery meant that she had a valve in her heart replaced by a donor. That will need to be replaced again at some point as it won’t grow with the rest of her heart but as it was so successful, we can look into other operations relative to her other conditions to improve her health and quality of life,” says Amie.

“She started a Special Educations Needs school a year ago and just loves it. It’s been fantastic for her sensory and physical needs and for her confidence.”

As Emily has beaten the odds and is no longer classed as ‘terminal’, Val and Amie have been able to focus more on her interests and learning rather than worrying about her health. One thing that Emily loves is stories, and the family credit Living Paintings for bringing them to life for her.

“Emily’s blindness is actually one of her biggest attributes,” says Amie. “She’s learned about the world so innocently and has learned it her way. I love her telling us about how she sees the world. Her blindness is almost an afterthought as it’s just a part of who she is.”

Emily is completely blind but has some light perception in her right eye with an empty socket in the other. The Living Paintings books with the raised tactile pictures are perfect for her to feel and create the images in her mind.

“We always read to Emily as a baby. She had a natural love for stories and so when I found out about Living Paintings books, I knew we had to give it a try,” says Amie. “We set up a Facebook page years ago to fundraise to take Emily to Disneyland Paris and it’s opened up a whole social presence and community for us. I found out about Living Paintings through that community.” Emily’s first book with the charity was Spot the Dog by Eric Hill. “She took to it immediately,” says Amie.

“She loves feeling shapes and animals and the books have really brought along her learning. When she feels something new, she likes us to describe it to her and she remembers and then learns how to describe it herself. It’s a great way of learning and she loves it. Julia Donaldson books are her favourite and we read the Tiddler book all the time. I posted a video of her reading this on our social page because it was just so amazing that she remembered all the characters just from feeling them in the book – it’s really special to see.”

As well as the books bringing stories and characters to life for Emily, Amie and Val are confident it will also help with her education.

“Emily is a keen learner and has started to learn braille so she can read herself. These books already really help with things she’s learning about at school and that, in turn, helps us. It’s hard to describe things to a blind child when they have no reference but the raised pictures in the books are fantastic for that.”

As Emily’s outlook looks more positive, the family are delighted to be able to focus on having fun together and helping Emily to learn. “She really looks forward to her Living Paintings delivery and it’s helped to unlock her imagination as well as enormously supporting her education. With her studying braille, these books will be essential to her as she learns to read herself. Knowing Emily as I do – I know she’ll get there in no time.”