Libby’s Strictly Special Day

Libby, 30, from Hertfordshire, was diagnosed at the age of 18 with Brown-Vialetto-Van Laere syndrome (BVVL) – an extremely rare, degenerative neurological condition caused by a riboflavin (vitamin B2) deficiency.

“Our daughter Libby was a normal baby girl until she was six months old. After a short viral illness, we noticed her eyes wobbling from side to side and were referred to Great Ormand Street Hospital for various scans and tests.”

Although Libby’s symptoms progressed over time, it wasn’t until she was 18 that she received her diagnosis.

“Due to BVVL, Libby’s mobility has declined – she has lost her ability to walk, the use of her hands has reduced, she is now deaf, has no speech and limited eyesight.”

Despite the challenges she faces, Libby’s love of life shines through.

“This has not stopped Libby enjoying life,” Libby’s mum Cathy says.

“She has taught us all how to communicate with her through British Sign Language and Makaton, and through her communication aids such as her SmartBox and communication book.”

A Day to Remember

For Libby’s special day, Willow organised a trip to London for Libby, her mum Cathy, and her intervenor Jenny, to attend a live recording of Strictly Come Dancing.

“Libby has been a very big Strictly Come Dancing fan since it started, so how appropriate that the show was celebrating its 20th year,” Cathy says.

From the very beginning, the day felt magical.

“Libby’s special day out was very exciting. Getting ready in her sparkling dress and shoes as we made our way to the BBC studios in Elstree, Borehamwood.

“Her face was a picture seeing all the celebrity dancers, and her wheelchair was positioned next to judge Craig Revel Horwood on movie-themed night.

“She was so excited to see herself on the TV when she got home.”

The family captured the memories in a scrapbook, which Libby proudly shared with loved ones, and later with the Willow team.

A once-in-a-lifetime moment on an even bigger screen

As special as the day already was, one extraordinary surprise remained.

Libby’s special day was featured on Piccadilly Lights, transforming her experience into a moment seen by thousands.

“Libby’s special day was a wonderful experience that we all treasure and to see it play out on the Piccadilly Lights is a surreal moment, a once-in-a-lifetime experience.”

Thanks to your support, Libby’s face lit up seeing herself not just on one screen – but two.

Your generosity helps seriously ill young adults and their loved ones create lasting memories, moments that can be remembered, replayed, and treasured for years to come.

Watch our Willow’s Piccadilly Lights video featuring Libby’s story as well as some other inspirational beneficiaries on YouTube.