Wish stories

Michelle never would have imagined that one of her children would be diagnosed with metachromatic leukodystrophy, a rare genetic disorder, never mind two. “Our world collapsed to depths greater than we could ever have imagined,” said Mum. The news came shortly after hearing that there was no cure for Lucas: “his condition was going to rob him of every function and result in his loss of life.”

After receiving the shocking news, Penelope quickly started gene therapy, spending most of Christmas in hospital, robbing her of quality time spent at school with her friends. Missing three months of school meant that Penelope wasn’t able to learn many of the skills that other children would have. As a result, Penelope “had lost a lot of confidence in her body’s abilities and strength.”

But royal family fanatic Penelope was given some hope whilst excitedly awaiting her wish to be queen for the day. “I know her school has done a lot about the queen, the jubilee and her death and Penelope was very captivated by this,” explained mum.

Penelope, her brother Lucas, and her mum arrived at the Nobu Hotel London, where Her Royal Highness Penelope would be residing for a two-night stay. “The suite, service, and breakfast were divine! Their kindness too was amazing, it all added to the very special treatment we had!” said mum.

The weekend also included a tour of Buckingham Palace fit for a queen: “The trip to the palace was amazing, it was an incredible surprise to go through the front gates!! The staff greeted her as Your Majesty and Queen Penelope I which was fabulous. They also included Lucas which was lovely.”

But of course, her royal highness had to attend a hat fitting at Rachel Trevor Morgan Millinery - the world-renowned royal millinery - where she was gifted a wealth of elegant hats and got to see all the hard work that goes into making them. “She had such a lovely time at Rachel Trevor-Morgan’s,” said mum.

Sharing a rare genetic condition with her brother Lucas means that the family spends much of their time in hospital, unable to make the joy-filled memories that most families take for granted.