“I wish to have a PS5 Games Console”
8 years old, Fareham
Undiagnosed breathing & digestive problem
Childhood innocence came to an end for nine-year-old Mikey when illness took his voice, his ability to eat and the freedom to play. His wish to have a gaming console has revived that childhood by giving him back a voice. Now he can chat with his friends and family online! It’s also given him back the freedom to play (once he’s finished his homework, of course!) and empowered him with choice when so much else in his daily routine is dictated by the medical care he needs.
Imagine that your baby repeatedly stops breathing. How frightening to witness their struggle and to be responsible for reviving them. Worse still to be that child. But these are things Mikey’s family have had to learn to deal with - they're his immediate medical team.
The first time Mikey stopped breathing, his mum Chevonne thought he was choking on his milk. But it became a frequent problem, alongside other complications, that has continued, and no one knows why.
Mikey, from Fareham in Hampshire, uses a ventilator and has a tracheostomy which prevents him from speaking, so he communicates brilliantly through signing or using a ‘talker’ device. The ‘trachy’ means he can’t eat either because it prevents him from swallowing, and his stomach struggles to absorb nutrients so he’s fed through a central line into his bloodstream. Nonetheless, he sits down with a plateful of food so he can join in family mealtimes and, when he’s able to go to school, he takes a packed lunch to play with so he can be with his friends.
The impact of illness
It’s frustrating for Mikey because his cognitive skills are unaffected. Doctors worldwide are perplexed by his condition, for which he currently has no diagnosis. He needs two carers 24/7 but this often means his mum and dad take it in turns to watch over him at night, which is exhausting.
Chevonne said: “Whenever he fed, it went into his lungs. At two weeks old, he wasn’t gaining any weight and made funny noises. I knew from his older siblings that it wasn’t right. We’d be sitting up most nights trying to help him take a breath. He spent the first year of his life in hospital. Then they put the trachy in.
“It was very scary and he and his siblings missed out on aspects of childhood. We can’t go swimming because of the equipment he needs, and we can’t go to the cinema because his ventilator is too noisy. We’ve all missed out. But Mikey never complains. He just wants to do what other children are doing and although we have to adapt, we wouldn’t change him for the world.”
Mikey’s dad George had to give up work to help Chevonne look after him. His older brother, 19, and sisters Mika and Skye, who are 12 and 10, are young carers. Between them, they can cope with many of his medical needs as well as any nurse does. They also translate his signing when needed.
Make-A-Wish insisted that Mikey was in charge of choosing his wish - regardless of his much-loved sisters’ ideas! So, he gave it a lot of thought and decided to wish for a sought-after PlayStation 5. Not just because he wanted to have fun – though that was part of it for this mischievous character! But because he can’t spontaneously go outside on his scooter with all the other children in his street as he needs constant care. He’s so vulnerable to viruses like Covid-19 that he shielded for a year, and he’s unable to go back to school until staff are trained to support his needs. He misses his mates. But now, he can interact with his friends through gaming!
Thanks to his Wishgranter Holli, and our friends at Ebuyer, his wish was granted in December 2020 – an early Christmas present. Not only can Mikey now have fun and game with his friends, but he can also enjoy spending time in his newly installed gamer’s bedroom and is happier tackling the tasks school have set him in exchange for an hour’s game time later.
Chevonne said: “Mikey and his sisters were desperate to go to Disneyland, but we were really nervous about that as we had never even thought about taking him abroad before. I’m glad he changed his mind to a gaming wish because it’s just for him and he’ll get more out of it in the long run.
“It really cheered him up when it arrived because we kept it a surprise and explained that it was really difficult to get hold of a PS5 so he really wasn’t expecting it. At that point it was just before Christmas, so he tells people that he had two Christmases.”
"Children like Mikey have a lot of choices made for them. He’s told ‘you’ve got to have this procedure, or you’ve got to take that medication’ but Make-A-Wish made a point of ensuring that the wish was his choice. He felt in control of something. He was the boss who got to decide. He put lots of thought into it and we didn’t assist him at all. He loved having that independence and that’s what made it so magical."
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