Family of Harborough teenager with rare disease are raising money for his treatment after his funding is stopped

The family of a Market Harborough teenager with a rare muscle disease are raising money for private treatment after charity funding was stopped.

By Laura Kearns
Tuesday, 2nd August 2022, 5:29 pm
Updated Tuesday, 2nd August 2022, 5:32 pm
Milosz Leska
Milosz Leska

Welland Park Academy pupil Milosz Leska has rare condition Myotubular Myopathy – of which there are only a few recognised cases in the world.

It most commonly affects boys and causes muscle weakness including the muscles which control breathing and swallowing.

The 14-year-old uses a wheelchair but requires weekly specialist physiotherapy sessions to build strength. With the regular treatment he can also take some steps.

His dad Michael says without physiotherapy his son would frequently end up in hospital.

But at the start of the pandemic the charity which funded his treatment – which costs around £3,200 a year – said it was unable to keep covering the costs.

His parents are struggling to make the payments due to the rising cost of living and weekly transport costs taking Milosz to and from his appointments in Bedfordshire – a 100 mile round trip. They say the additional transport costs add up to around £100 a month.

Michael, a photographer from Harborough, said: “The condition and muscle deterioration connected with Myotubular Myopathy affects Milosz’s ability to walk by himself and can lead to numerous complications when he falls ill.

“In addition, Milosz’s respiratory and voice projection are affected and he requires regular physiotherapy to keep going at a level whereby prolonged hospital stays are avoided.”

The family have started a fundraising page to help raise the money to pay for his treatment and are so far half-way towards their target thanks to donations from friends and family.

They say the therapist who provides physiotherapy has worked with their son since he was 10 months old and if they were to seek care on the NHS Milosz would only be entitled to one session every three months.They are now calling on residents to help them raise the additional funds. Michael added: “If you could find it in your heart to help we would be forever grateful. As a family we are in this together to keep Milosz healthy and walking.”Visit gofund.me/69a36d16 to donate or find out more.