Staff at the Oasis Hub Waterloo Monday meeting were privileged to have a very special speaker share their story with them last week.
Taking on a slot at the weekly meeting Khamani, a ten year old pupil at Oasis Academy Johanna Waterloo, shared his journey through living with Dystonia so far with staff from across the Oasis family.
Khamani was born four weeks prematurely with his umbilical cord wrapped around his neck. This resulted in damage to his brain, which lead to a diagnosis of Dystonia when he was 2 years old. Dystonia is a neurological disorder effecting the way muscles can move or be used, and often results in unintentional spasms or significant tremors.
Throughout his presentation Khamani proudly took us through his treatment programme to date, and demonstrated how he uses his neurostimulator to help him with his tremors. He explained how his determination and willpower has stayed constant even in the toughest of times.
“I have found ways to do activities because I am determined to do activities on my own, like make a sandwich”
This is not the first time some of us had met Khamani however. He is well known in the Oasis Waterloo family for his tenacity in starting the Soft Play Crew at Oasis Academy Johanna. In 2015 Khamani and his ‘crew’ started working on raising money to create a soft play area in which all children, regardless of health difficulties could play together safely.
As an undeniable ambassador for the Oasis ethos, he has shown encouragement for inclusion and equality in all aspects of life and pure perseverance in raising awareness of his condition with a view to helping the soft play project continue. Having taken part in bake sales, a fundraising lunch and firm negotiations for equipment we are excited to see what Khamani will do next.
When praising Khamani for his tenacity, Founder of Oasis Steve Chalke said “I think it’s safe to say he will never be out of a job when he is older”.