'Words can’t describe how magical it was' - Disney dream come true for seven-year-old Lillia who has mitochondrial disease

"We’ve never taken Lillia abroad and thinking about going out of this country on a plane with her, with her needs and all her equipment, is very daunting and could be very stressful for us all,” says Emma. “Knowing we could take all her equipment and go and experience Disney here rather than going to Paris or Florida was just brilliant.”

The Sheppard family were among more than 160 families affected by life-limiting or life-threatening illness who experienced a special three-day immersive Disney experience at a Staffordshire hotel last week. Organised by The Walt Disney Company UK and Ireland, children’s charity Make-A-Wish UK and The Kentown Wizard Foundation, the Disney Wish experience was all about providing a memorable opportunity for families to take part in events with their favourite Disney stories and characters.

The beam on Lillia’s face as she met Disney princesses was a priceless moment for Emma. Her daughter also took a liking to Mickey and Minnie Mouse, a bond captured in precious photographs of the family from their time at the event. “It was just out of this world. We made some absolutely amazing memories as a family of four.

"The staff and volunteers were amazing, the hotel was magical. We [live] only an hour and twenty minutes away from the venue but we felt a million miles away [from home]. You felt like you were actually at Disneyland. The characters were amazing and had a lot of time for the children. Lillia and Harrison were both smiling from start to finish…Words can’t describe how magical it was. We just didn’t want to come home.”

The former Girls Aloud star Bradford-born Kimberley Walsh was a celebrity ambassador for the event, alongside footballer Mason Mount. Kimberley spent time getting to know Lillia and her family, seeing first-hand how much the event meant to them. “Children like Lillia deserve a [Disney] Wish because they go through so much,” Emma says. “It’s something so special, and it’s just for them. Lillia has been through a huge amount but seems to come through smiling.”

Lillia was diagnosed with mitochondrial disease just before the age of five, having experienced medical complications for a number of years. At five months old, her parents notice rapid eye movements and a series of tests revealed she had severe sight impairments.

Further testing found kidney anomalies and Lillia was also experiencing motor delay. After having tonsillitis at the age of three, Lillia regressed in developmental terms, losing some of the Makaton language she had learned and her ability to weight-bear.

Genetic testing in October 2020 found a fault with the OPA1 gene and a muscle biopsy in the following February brought confirmation later that year that Lillia has a form of Leigh Syndrome. The family were referred to specialists in Newcastle. "It was really hard for us to take in as a family,” Emma says. “It was hard thing to accept. You don’t expect to find out your child has a life-limiting condition and there’s nothing out there to treat or cure it.”

Since then, the family have raised around £11,000 under the guise of Lillia's Mito Mission. Their efforts sit within the banner of My Mito Mission, a charity set up to empower people affected by mitochondrial disease to tell their own story to increase awareness, raise funds for research and boost hopes of finding a cure. Last year, the family’s fundraising activities included a Fully Monty show at a local working men's club, starring Matt and five of his scaffolder friends.

“What keeps us focused positively, despite the inevitable wobbles is Lillia herself,” Emma says. “She is the most delightful little girl and always smiling and happy. She loves school and adores socialising with other children and has the most amazing relationship with her big brother."

“We take everyday as it comes and make as many memories as we can,” she adds.