Ava was born with a complex brain injury following a very rare infection during her Mum’s pregnancy. With damage to every section of her brain, Ava underwent the first of multiple neurosurgeries at Great Ormond Street Hospital (GOSH) when she was just 10 days old.
Ava’s brain injury has caused cerebral palsy, uncontrolled epilepsy, scoliosis, hip dislocation and muscular, skeletal issues. She is non-verbal and a full-time wheelchair user requiring 24-hour support and care.
Ava’s Mum Liz told us, “When we first found out the extent to Ava’s injury and disabilities, our world fell apart. It took a while for us to adapt and accept our new reality, but now we see Ava for exactly who she is meant to be – our lovely, fun girl who is a blessing.”
Ava has been in and out of hospital all of her life and due to her disabilities spends a large amount of time at home. Finding Spread a Smile was therefore a lifeline for Ava and her family.
“We came across Spread a Smile when Ava was 13. A friend who had also been in and out of hospital recommended them to us and so we registered online to find out more. Then out of the blue the following Christmas, one of the beautiful Spread a Smile ‘Smile Hampers’ arrived for Ava full of carefully chosen gifts. It really was amazing!
“By this point, Ava had been off school for quite a while during and post Covid and she was feeling incredibly lonely and isolated. Then the Spread a Smile Fairy turned up on our doorstep, singing to us and providing an injection of pure joy and happiness. It was like liquid sunshine, brightening our day and Ava thought it was the best thing in the world.”
From that moment, Ava was hooked and the family signed up to join Spread a Smile’s virtual one-to-one and group sessions.
“Ava particularly loves musical theatre and her singing sessions with the Fairies and entertainers. Hearing them sing brings her so much joy. She sometimes invites friends she met in hospital who are also stuck at home and they join in together, creating a community of friendship. It’s nice for them to meet online to do something fun, when their world is so enclosed by the limitations of being at home. It breaks up the week and makes us feel less isolated and alone. When we take part in the group sessions, we see we have people there to support us.”
“A key thing for Ava is that the sessions focus on her. Because of her disabilities, she doesn’t get to make many of her own decisions or have her own independence. Spread a Smile makes her time with them, all about her. They ask her what she wants to do, focus on what she likes and enjoys and tap into that. There is nothing about illness or disability, it’s just a safe space for her to live in the moment, have fun, be in control and connect with other people.
“As a Mum, it’s wonderful to see how much happiness both Ava and I find with Spread a Smile. The days are long as we have to spend a lot of time at home. I can feel very alone sometimes as I might not see other people, apart from Ava’s support carers, for days at a time. Spread a Smile welcomes us both with open arms. Whilst Ava is enjoying the sessions, I can just sit with her and have half an hour of respite with a cup of tea! I get to chat to the entertainers and other Mums and have found a community who understand. If I’m exhausted, we also turn to Smile TV, Spread a Smile’s TV channel as it’s full of amazing resources to keep Ava entertained for a little while, whilst I just sit down.
“Spread a Smile has brought us so much joy during some of our darkest days. They are there for us, holding our hands and that means the world.”
Please help ensure we can continue to support young people like Ava and their families by donating today. Thank you.