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“I wish to go to the moon”
4 years old, Northampton
Spinal muscular atrophy
When Jacob was diagnosed with spinal muscular atrophy, doctors told mum, Kim that he may not survive past primary school age. But Jacob has defied these odds, and is now a tenacious 19-year-old with a drive to push boundaries. ‘If someone tells Jacob that he can’t do something, then he’ll do it,’ said mum Kim. That’s why when Jacob chose his wish aged just four, he chose to go to the moon - something he thought would push the boundaries of what was possible. Now studying film at university, Jacob told us how his wish was massively influential in shaping his career path, ‘It started my love for film and Sci-fi'.
‘At 14 months old he was diagnosed with spinal muscular atrophy, a rare neuromuscular condition that would affect him physically,’ said Kim. After being told that Jacob may not survive past primary school age by doctors, Kim told us how she ‘couldn’t describe the emotions I felt as a mother.’
Jacob’s condition has impacted his mobility, leading him to rely on his wheelchair. Because of this, Mum told us how the family always has to bear in mind what they can and cannot do. ‘There’s lots of things we can’t do. He can’t get into some places.’ For Jacob’s younger brother Toby, providing 24-hour care to Jacob has meant the family hasn’t been able to give him as much attention.
‘Life is controlled by hospital appointments’, said Mum, but she was always determined for Jacob’s life to not be shaped by his condition.
"We try to focus on the positives because we know that life can be really short and messy sometimes."
Not only does Jacob share his mum's positive outlook on life, but he also shares her determination. As Mum told us, Jacob is as independent as possible - ‘he doesn’t want his mum looking after him!’. Now at university, Jacob shared how much he enjoys studying film: ‘I love it! I love knowing how it's all created!’. Kim promised herself that Jacob would ‘live life to the fullest every single day,’ a promise that was carried out through his wish.
Jacob was keen to go outside the box when choosing his wish to go to the moon. ‘I like to push boundaries,’ said Jacob. Part of this drive to go beyond the perceived limits stems from his life-limiting diagnosis: ‘It's made me keep a positive outlook on life. Life is too short to sit there and worry, you have to make the most out of things.’
Despite choosing what the family thought would be an impossible wish to conjure, Jacob’s mum told us how the wish exceeded all their expectations: ‘They thought outside the box and found a way for him to have his wish’.
Dressed as Buzz Lightyear, Jacob was able to reach for the stars on his wish. After being whisked away by a limo to pick up a shiny new laptop for Jacob, the family enjoyed a trip to the National Space Centre. Whilst there, Jacob was arrested by stormtroopers: ‘Seeing the Stormtroopers was my favourite memory,’ said Jacob.
For mum, simply seeing Jacob’s face light up with a smile that beamed from ear to ear, was her favourite moment: ‘His eyes were wide with excitement. It was all about him, he was a VIP and everyone treated him fabulously.’
The impact of Jacob's wish
The impact of the wish has been monumental in shaping Jacob’s career path: ‘He became a huge Star Wars fan after his wish, which then started his passion for movies and films’. Jacob now hopes to be a scriptwriter and director. The laptop gifted to Jacob was essential in enabling him to write and attend school. As mum told us ‘We had years of use from the laptop!’
‘He had that break from real life to have a special wish,’ said Mum. Jacob’s early childhood involved a combination of uncertainty and monotonous doctor's appointments. But through embarking on an experience that gave him a piece of his childhood back, the wish supplied Jacob and his family with a needed escape.
"When children are so embroiled in hospital visits and care they miss out on being a child. A wish gives them back that sense of childhood."
Mum stressed the importance of a wish, not just for children like Jacob but for the whole family: ‘The parents can experience their child happy, it’s a memory-making experience that doesn’t focus on appointments or medicines. That’s so important to have.'
15 years on from his wish, Kim and her colleagues at the West Northamptonshire Council took on a walking challenge in June that raised over £2,000 to grant life-shaping wishes for children like Jacob. Thinking of taking on a similar fundraising challenge? Here’s what Kim said: ‘Just do it, every little helps - it's so important to give these moments of joy to children and their families.’
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