A young girl with a life-limiting illness who had her Euro Disney dreams dashed due to Covid has been given a week to remember by Pembrokeshire charity, Belle’s Story.

Five-year-old Tiara was diagnosed with Marfan Syndrome when she was two years old. She was initially referred to Great Ormand Street Hospital for either heart surgery or a heart transplant.

“Unfortunately, the doctors decided the surgery was too risky,” said her dad Jon. “We have been treating Tiara on medicine only for the past three years to prolong her time with us.”

Life during Covid has been difficult as Tiara has had to shield To make things even more difficult a planned trip to the Disneyland Paris resort had to be cancelled due to Covid and fears of catching coronavirus.

Dawn Thomas, Withybush General Hospital’s palliative care play specialist, contacted Belle’s Story to see if the charity could organise something special for Tiara and her family.

“Stella at Belle's story offered us the chance to go anywhere but when we asked Tiara - she said Bluestone instantly,” said Jon.

“She is still currently able to walk and play but gets out of breath after a few minutes of activity. She loves the basic things - a swing, a slide, an outside play area, the pool at Bluestone and the wildlife there.

While at Bluestone the family had a visit from Tiny Tim and the Fairies who performed 30 minutes of fun and games for Tiara and her sister Abia, aged three, with special gifts at the end.

“This opportunity from Belle's story is something we cannot afford and to get the chance to spend a week at Bluestone was amazing,” said Jon.

“It's so nice to see Tiara and her sister enjoying just the simple things. It won't be long before Tiara will require a wheelchair and so these memories of Bluestone where Tiara was still able to be a 'normal' five year old playing, swimming and active will always remain with us.

“These holidays are so good for Tiara's upbringing and the memories will be with all of us forever.”

Belle's Story was set up in memory of Wolfscastle's Belle Curran, who lost her battle with interstitial lung disease at only ten years old.

The Belle’s Dreams part of the charity gives children with life-limiting conditions memory-making experiences.

To find out more about Belle's Story visit the Facebook page or bellesstory.co.uk