It has been an extraordinary journey for Salford-born Warren Armstrong, who, almost a decade ago, captured our hearts with his unwavering spirit and resilience in the face of Möbius syndrome.
At the age of 11, Warren has defied all odds, proving that strength, determination, and the support of a loving community can indeed overcome the most challenging obstacles.
Speaking to the MEN in 2014, Warren’s mum, Jannine Kansu, said she knew something wasn’t right but it was not until the age of four months that doctors were able to diagnose the rare syndrome.
Möbius syndrome, a rare neurological disorder characterised by facial paralysis and limited eye movement, presented Warren with unique challenges from the very beginning.
It is believed only around 20 children in the UK suffer the same symptoms as Warren, who lives with two of his four siblings, sister Leona, 15 and brother Leyton, 13.
Over the years, Warren’s progress has been ‘very challenging’.
However, since we were first introduced to Warren at only one years old, he has spent his time watching ghost hunts, exploring true stories and finding out his favourite word is ‘burgers’!
Jannine explained “Warren has very challenging behaviours. He has social anxiety.
“Unfortunately my I lost my car back in March last year, so we’ve been without a car because I just can’t afford to buy a new one.
“Unfortunately, Warren doesn’t qualify for the mobility component on Disability Living Allowance for a car. So we’ve basically been prisoners in our own home since Warren just does not like going outside on public transport.”
The mother of three added “He’s very comical though! He makes a lot of people laugh sometimes with the wrong things but the people who know him understand that’s just the way he is.”
Warren was born with deformed hands and had to be fed through a tube in his first few weeks as he unable to latch on to his bottle.
With the aid of mum and a network of dedicated professionals, he has developed ingenious ways to communicate and express himself.
One of the most significant milestones in Warren’s journey has been the development of his technological skills.
Despite the challenges Möbius syndrome presented, Warren discovered a passion for computing. His self-taught knowledge of gaming, playing on his Playstation and streaming on Twitch came as a surprise to his Mum, who says he ‘struggles’ with his learning and day to day tasks.
Jannine said “We moved house when Covid hit, and it was a new school, and he just couldn’t settle back into mainstream school. For several years, we were on and off with them and then we moved into our forever home.
“He started a new school in the area and he settled for a few weeks, but then bullying started with other children.”
Jannine says children at school would make fun of Warren’s appearance – leading to him being reluctant to attend school.
She opted to home school Warren, but that presented problems of its own. She’s now attempting place Warren in another local school.
She adds: “We went for a meeting actually last Wednesday at a school who were kind of understanding but, practically, said that with Warren’s needs they won’t be able to facilitate that going forward.
“We’re stuck at square one again with Warren still being at home and not being able to go to school. There just seems to be no support out there for him.”
As he continues to break down barriers and defy expectations, we eagerly await the next chapter in his journey.
Both schools and Salford Care Organisation Children’s Physiotherapy and Occupational Therapy have been contacted.
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