Wish stories

In August of 2014, when Jack was 16 months old, mum received life-changing news: Her baby had MPS, a rare genetic disorder that impacts the body's organs and skeletal structure. "The doctors told me that he had an incurable condition which would end his life before the age of ten,” said Mum. Impacting his mobility, Jack’s childhood has been shaped by his condition: “At school they have ball games. He knows he can't play because he can't bend down to pick up a ball.” Unable to join in, Jack is often isolated from his peers, watching from the side-lines instead.

Jack’s condition means a long drive once a month to Great Ormond Street Hospital. “I have to get other people to pick my children up from school. My middle one doesn’t understand why Jack gets special time in London.” Jack’s condition confuses his younger siblings: “We disappear for two nights and they don’t understand why.”

Whilst most kids his age can go to parties, Jack often can’t: “It’s hard having to say no if there’s a party coming up.” But following a bone marrow transplant, things are looking positive for Jack. “He was lacking an enzyme that he now has. Without the breakdown of the enzyme that he was lacking his body would stick together like cement,” said Mum. 

Still, Jack’s future is tainted by his condition. As mum said, “His feet go out and he walks on his tiptoes, his knees go out, he has hip dysplasia, he has a curvature of the back, he has a mild heart condition and respiratory conditions, he has stunted growth, he has hearing loss and he's short-sighted. There are probably some other things too. His organs are growing, but his body frame is stunted. So we could have issues when his organs get bigger but his body isn’t growing.”

But while living with the several consequences of his condition and frequenting hospital, Jack has Christmas to look forward to. When choosing his wish, caring Jack said “‘I’m going to use my wish so we can spend time together as a family!” Jack therefore decided to go to Lapland so that he could give his family “the best Christmas ever!”

As Mum told us Jack “spoke about it all the time! He asks Alexa two questions each day: how long to the 1st of December and how long till Christmas day.”

The wish came at a fundamental time for Jack, as December proves to be a troublesome time for his immune system: “December is the time we love the most but it's also the time that he's most vulnerable to being poorly. Sometimes him being poorly sends him to hospital. He gets temperatures that he can’t control.”

Last December was tainted by a hospital visit following respiratory issues that saw Jack being drip-fed antibiotics. But this year, Jack’s December started off on a different note: instead, his family was immersed in a land full of magic and Christmastime cheer.

Surrounded by glistening snow and herds of huskies, Jack was in his element. “His favourite moment was when he was with the huskies,” said Mum. The family was able to spend much-needed time together and even sneaked out to have a go on their sleds. “It was around 9:30 at night and we were all wide awake because of the time difference. So I said ‘Come on we’re going sledding!’ We laughed and laughed and laughed!”

For Mum it was the little things that made the wish that extra bit magical: “The snow was different, it glistened like someone had put glitter in it and it was so soft! Jack fell out whilst he was sledding and he didn’t hurt himself at all, it was like a pillow!”

The wish allowed the family to do something that many take for granted: they were able to make life-long memories that they could share as a family. As Mum told us “Getting time together as a family is a massive positive for us. Jack deals with pain every day, but he was buzzing on his wish. What made it so special wasn’t just the time we spent there; it was the memories that we created as a family.”