Wish stories

Jack's wish...

“I wish to have a prom for my 10th birthday”

9 years old, Sunderland

Sanfilippo syndrome

101% funded

Imagine losing control of your own body and not being able to talk about it. Jack, nine, from Sunderland has never uttered a full sentence. At 16 months, he was diagnosed with Sanfilippo syndrome - a rare type of childhood dementia, causing fatal brain damage and leaving him in a wheelchair and without speech. Tragically, there is no treatment and most patients never reach adulthood.

Jack's story

November 2019

Jack in hospital, wearing a hospital gown with a plastic dummy around his neck and a cheeky smile on his face.

Silence is golden

"With him being non-verbal, Jack has taught us that love needs no words."

Gemma, Jack's mum

A book with no words

The devasting diagnosis in the earliest chapter of his life was inconceivable for Jack’s family. Mum, Gemma, said the news was like an out-of-body experience:

“It was like they were telling someone else. I can’t explain the feeling, even ten years on.”

Unfortunately, Jack’s dementia means he is only regressing in health. Gemma described it as:

“Lately it’s like getting a book with no words; it’s hard to read him.”

The family find it hard to do things together due to Jack’s medication and inability to participate in many activities. This leads to the often unseen struggle for the family, as Jack’s parents share responsibility for looking after him and taking out his sister, Lucy.

Jack's wish

Filling in the blanks

With Jack being non-verbal, he could not express his Wish. However, using a mother’s intuition, Gemma plans to bring Jack’s personality to life: he loves school so much that it’s known as ‘Jack’s Disneyland’. He also loves Cheryl and listening to her has helped the family through many tough times, including trips to hospitals and tiring journeys.

Jack has always preferred the company of adults to children his own age. But, despite this, he’s proved that you don’t need words to impress and is known in school as ‘Jack Hefner’ due to his affinity with the ladies! This may be due to possessing the “best laugh you’ve ever heard.”

With all this in mind - and a helping hand from you - Jack’s wish can become a reality:

Ingredients:

  • Music: Cheryl
  • Guests: Friends (& ladies)
  • Theme: Celebration

Main Course:

  • A very special prom for a very special boy
Jack, wearing a red t-shirt and an inflatable unicorn hat, is sitting in a hot tub with his dad and looking into his dad's eyes.

Jack playing in a hot tub with his dad

End of the chapter

Sadly, Jack has never truly celebrated any milestones in his life due to his debilitating condition. He can’t play with toys, so birthdays and Christmases bring only practical gifts, but with your support, we can help Jack celebrate not just this year, but all ten!

Every year I cry. His birthday signifies another year over.

The family have turned to Make-A-Wish so that they may make memories to treasure for a lifetime, no matter how short that may be.

Mum said: “I’ve invited people that have impacted Jack’s life, like his nurse, barber and his teachers. It’s for us all to share and enjoy time with Jack.”

Sponsored donations made towards a child’s wish will go towards their One True Wish. If a child’s wish receives over funding the additional donations will be put towards a similar wish. If a child's wish doesn't reach 100% funding their wish will still take place and general funds will be used.