“Starlight are an incredible charity, and we are very lucky to have them in Ava’s life.”

In 2015, we granted Ava, who suffers from a very rare degenerative condition called Brown Vialetto Van Laere syndrome, “the most exciting wish of meeting her heroine Aurora at Disneyland”, explains her mum, Laura.

“This wouldn’t have been achievable without Starlight’s kindness and it was truly the holiday of her dreams. Since then, we have been blessed with other wonderful opportunities and amazing support. Which, especially through the covid period, was utterly indispensable with crafting packs and art sessions.”

It’s allowed Ava to “express herself and to reduce the isolation of being at home for large swathes of time.”

When Ava was younger and recovering from her surgeries and illness, she experienced a lovely team of play specialists on the ward. She also took part in cake sales and had superheroes visiting her!

“We are regulars at the Royal Manchester Children’s Hospital – Ava’s been in for several surgeries and periods of illness.”

“They are very, very long days and weeks when you’re recovering post-surgery and anything that can lift the mood, create distraction or give a different focus to the day has to be applauded,” Laura explains.

“We’ve also benefitted many times from the mobile TV and play systems in various environments and they’re always welcome interruptions when we’re flagging and needing a distraction.”

Most recently, we took Ava and her family for a break to Alton Towers and her mother said that “the freedom it afforded us as a family after lockdown was just brilliant”.

Ava is now 16 and an award-winning artist working with ASDA. She is drawing on her own insight and creativity to help design accessible and fashionable clothes for disabled children. We’re so proud of everything Ava has accomplished as both a designer and an advocate for young disabled people.

The collection can be found here.


Your donation will help Starlight support seriously ill children in the UK

could help children of all ages and abilities benefit from a Sensory Unit to relieve anxiety and stress.