Eight-year-old Kash Edmonds is in a daily battle with his own body, which doesn’t always do what he wants it to do – so Satan’s Little Helper delivered some respite.
“Kash has a rare movement disorder similar to cerebral palsy,” explains his mum Nicola. “We don’t know exactly what it is, because we’ve decided not to put him through any more tests as these involve painful lumbar punctures.”
Kash never stops moving, so he burns a lot of energy throughout the day. He’s also non-verbal, requires a walker to get around and is vulnerable to germs.
For the first six months of Kash’s life, things weren’t going to plan but there was nothing obviously different about him. That changed in an instant.
“He started having three-hour long seizures and twice had a procedure called an intraosseous infusion. Advanced paramedics had to drill into his bone marrow and inject medication, so it would get into his bloodstream faster.”
High alert at all times
Nicola, her husband Dave and their two other children Poppy (4) and Zak (12) live in a constant state of alert.
“His two siblings put up with a lot. They’ve seen Kash in a way that kids their age shouldn’t have to. They both take looking after their brother very seriously. I remember once we asked Zak to look out for the ambulance, because Kash was having a seizure, and he went onto the street with his binoculars!”
Despite his battle, Kash has developed into a fully cognitive, social and delightful boy.
“He’s in mainstream school, everyone knows and loves him but he does put up with a lot of pain. He is non-verbal, so he nods for yes and no – he’s also got a PODD book (a book that contains symbols and words) to communicate with.”
When Kash gets tired, the control he has over his movement decreases. He’s also at increased risk of a seizure, which can be dangerous.
“When Kash has less energy, it turns into a disaster for him. It can also put him in such pain that he vomits, so we’ll always try and be at home for a 1pm nap.”
A very grateful kid
Because of Kash’s limitation, travel isn’t an option and the family have learned how to make their own fun.
“He’s aware of the sacrifices his family make for him and wanted to apply for Satan’s Little Helper on behalf of his siblings. He spent a long time working on the accompanying letter we sent with our application.”
So, when Satan’s Little Helper heard about their story, we were determined to do something that could bring them all together.
“We feel lucky and privileged to have been provided with a pizza oven,” says Nicola. “We were very excited when it arrived and making pizzas together is something that we enjoy doing as a family.
The first time we used it, Zak and Poppy had fun doing their toppings, while Kash was giggling because he found such joy in being a part of it.”
Home sweet home
Going out isn’t the be-all-and-end-all, adds Nicola.
“We spend a lot of time at home, so bringing a pizza oven to us rather than going to a restaurant means we can do it on our terms and on days that suit us.
“Plus, if Kash is sleeping after a seizure, the rest of us can make some pizza bases and have some fun without us needing to leave the house.”