Video star Connor lifts lid on “daily battle” of life with rare condition

Video star Connor lifts lid on “daily battle” of life with rare condition

By Admin | 26/03/2020

Video star Connor lifts lid on “daily battle” of life with rare condition
200156-04 Connor Towey with documentary website

JUST living with a life-limiting condition for most people is a tough, daily battle.

But inspirational Connor Towey continues to defy the odds — and has released a documentary highlighting his disorder.

The 20-year-old was diagnosed with the incurable condition Duchenne Muscular Dystrophy (DMD) at age three.

The rare, muscle-wasting condition causes bone weakness and most youngsters with the disorder are expected to be fully wheelchair-dependent by age 12.

Connor, however, has defied the normal, long-term diagnosis and is still able to walk unassisted.

“I wanted to make the documentary to raise awareness of the condition as it’s still not very well known,” said Connor, of West Avenue, Rawmarsh.

“Some people look at me and would never think I have this condition, so I wanted to show what it’s like to live with.”

Also featuring mum Zoey, friends and doctors, the documentary — titled Duchenne and Me — gives a raw insight into Connor’s day-to-day life.

It includes his two hospital visits a week in Sheffield, where he is administered medication over the course of a four-hour period, and recounts how he must take 63 tablets a week to stop his bone muscles deteriorating. There are also regular physio sessions.

The film — made by friend Harrison Fletcher — was a chance for Connor to speak about the condition in his own words and those of his family.

“Some days are tough,” said Connor. “I get upset and start asking myself: ‘Why me?’

“But I continue to stay positive and I always think there are people worse off than me.”

Connor’s mum Zoey said she reminded herself every day of how lucky she is to have Connor and how well he had done in exceeding all the expectations of his consultants.

“Connor is so ambitious and positive about everything he does,” added Zoey.

“His determination is unbelievable and we are so proud of him.”

The documentary shows the reality of life with DMD — revealing how Connor had to stop filming halfway through after he fractured his back.

After a tough five months of rehabilitation, Connor recovered sufficiently to press on and finish the film, which is available to watch online.

Clips show Connor’s fun side of life, including his love for acting and making comedy videos — some of which went viral on social media and resulted in him gaining celebrity followers including TV presenter Jenny Powell and racing driver Seb Morris.

Connor says the videos were a way to help him cope with his condition and escape the stresses of everyday life.

So what’s next?

Having already gone to Wakefield College and gained a university degree in performance theatre, Connor is now turning his efforts to public speaking.

“I want to get into schools and colleges to talk about my condition,” added Connor.

“I want people to know they can still pursue their dreams no matter what.”  

The documentary, made to help raise funds for medical research charity Duchenne UK, can be seen on the Fletcher Films Facebook page.

Visit justgiving.com/fundraising/duchenneandme to make a donation.



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