A 4-year-old girl with a rare brain disorder has seen her Disney dream realised, thanks to local fundraising group, Simon’s Heroes.
Gracie Hargreaves from Mile Oak, suffers from Rett syndrome, a rare genetic neurological and developmental disorder that affects the way the brain develops, causing a progressive inability to use muscles for eye, body movements and speech.
“Gracie developed as normal until she was 18 months old”, her mum Keleigh explained, “then she started regressing and stopped talking, using her hands and then finally lost the ability to walk and stand. Her condition was diagnosed in January 2018 after undergoing a blood test. She also has regular EEGs and MRI scans as seizures and epilepsy are very common with her condition so her paediatricians like to keep an eye on that.”
The 3-night stay at Disneyland Paris was funded and arranged by Simon’s Heroes children’s charity, and included lunch with the Disney Princesses.
“Gracie had always dreamed of going to Disneyland so we were thrilled when we found out it was coming true. We cannot express how much it meant to us to go; it made most of my family cry when we were told!
“The trip was phenomenal, Simon’s Heroes made sure we had an interconnected room, which made things ten times easier for navigating Gracie’s buggy and wheelchair and gave her a lot more space, which she prefers.
“Gracie’s favourite Disney Princess is Cinderella who was there during the Princess lunch! So we spent around 15-20 minutes with her and Gracie was in her element. She really thought she was with the real Cinderella! It was her favourite part of the whole stay! It was like she was in a magical world and couldn’t stop looking around and smiling at everything. We even took her headphones off, which she cannot be without, and she still thoroughly enjoyed it and didn’t notice her music had gone. Every Princess made extra special time for her, which was so special to us.
“The trip meant so much to us as it’s not something we could have afforded and it’s every child’s dream, especially Gracie’s, and l am glad we have been able to do it now, before her condition deteriorates further.
“The whole trip was magical, Gracie smiled and laughed the whole time, she didn’t sleep much mind! We cannot thank Simon’s Heroes, and the individuals and businesses that donate to the charity, enough for this special & unforgettable trip.”
Author: C Abbott.
