Milosz is diagnosed with myotubular myopathy. He recently had the opportunity to fly a glider. Below Milosz’s mum Monika, writes about Milosz’s flying experience.
Milosz is a clever, funny and strong-willed boy who lives with his family in Market Harborough, Leicestershire. Milosz was born with a very low muscle tone and at the age of four, he was diagnosed with X-linked myotubular myopathy.
Now, Milosz is a 10 year-old boy who attends St Joseph’s Catholic Voluntary Academy in Market Harborough. He is a very bright student who, in spite of missing some school days due to hospital appointments, physiotherapy and illness, always meets the expectations or is above.
In 2017, when it became apparent that Milosz would benefit from the lightweight wheelchair, we applied to the Variety Charity to get some funding for it. It was an amazing event as the whole of Milosz’s school, Market Harborough’s community, as well as the Variety Charity, contributed to getting Milosz’s new wheels. You can read the full story below.
Two years after the wheelchair funding, Tony Cadwallader from Variety Charity who lives in the same town as Milosz, contacted us to ask if Milosz would like to visit a local Gliding Centre at Husbands Bosworth to help with the ideas for how to adapt it for the kids with mobility issues.
We booked the date and met with Tony at the centre. After a detailed tour when Milosz could sit in different gliders and have a go in the simulator, we were told that Milosz can fly a glider. Milosz was excited and at the same time scared. The excitement won and that was the first time he had a chance to fly the glider and even navigate it under a caring eye of Paul Howard, the instructor.
The feeling was amazing both for him and for us, the parents. It was heart warming to look at Milosz flying away from us, enjoying his life without our constant presence. When Milosz finally landed he quietly said that this was the best time of his life. Seeing Milosz’s happiness and excitement Paul said that we can arrange another flying experience for Milosz.
The people at the Gliding Centre in Husband Bosworth are amazing, they are enthusiastic about flying and enjoying life with passion. Their dream is to be able to inspire the kids with a disability to see that ‘the sky is the limit’; they would love to help kids to experience something new and maybe develop a new passion for flying and … life.
Milosz’s second flying experience was scheduled for October half-term. This time Milosz was very excited and happy, he couldn’t wait to be in the sky again. Once more I was touched seeing him flying away from me, being free, enabled and content.
Milosz would love to continue with his newly discovered passion. The instructors are happy to help him fulfill his dreams and are willing to schedule some more flights. Unfortunately, the Variety Charity is no longer involved in funding the adaptations and the Gliding Center is not suitable for the kids with mobility issues. At the moment Milosz can take a few steps to the glider and then two people will lift him into the glider but when he is older and heavier this might not be possible.
The Gliding Centre at Husband Bosworth is such a warm, welcoming and inspiring place, now it is the matter to find some funds to allow everyone to enjoy this amazing place.