When she was a baby, Charlee Baldwin’s parents were told she would never be able to move her limbs.
She was born with Moebius syndrome, an incredibly rare neurological disorder that affects around 200 people in the UK.
It causes facial paralysis and weak upper body muscles which severely limit movement.
Through intensive work with doctors Charlee learned how to roll, sit and hold her head up by three-years-old.
The now six-year-old, from Hemel Hempstead, now also enjoys school where she’s described as ‘feisty’ by her teachers.
Charlee’s mother, Natalie, told Metro.co.uk: ‘She was born very floppy, like a rag doll so was taken away very quickly for blood tests and a brain scan.
‘It was such an incredibly challenging start to her life. They found patches on her brain, she wasn’t showing any facial movements and one of her kidneys hadn’t developed properly.
‘Very little was known about the condition so we were all extremely frightened about what was happening.’
Natalie said Google was both her ‘best friend and worst enemy’ as she found out that the disorder affects anywhere in between 1 in 50,000 and 1 in 500,000 new-borns worldwide.
Charlee, who is non-verbal, loves spending time at home watching Disney films – with the bright colours engaging.
Therefore, her family were overjoyed when they learned they’d been nominated for a ‘dream come true’ by Make-A-Wish UK from a case worker.
Charlee, dad Stephen, mum Natalie and sister Darcy were whisked off to Disneyland Paris for an experience of a lifetime.
Natalie said: ‘The Disneyland Paris trip was just wonderful and more than we could have ever hoped for.
‘Charlee’s non-verbal but as parents we could sense the total joy she had meeting the Disney characters, seeing all the colours and hearing all the music.
‘We’ve taken her on holiday before but just in England – and I always have to think about a lot and pack so much with us in the car.
‘For Disney we were picked up, put on the Eurostar, greeted on the other end – it was just weight off our shoulders.
Wat is moebius syndrome?
Moebius syndrome is a rare birth defect that mainly affects the muscles that control facial expression and eye movement.
It is caused by the absence or underdevelopment of the sixth and seventh cranial nerves, which control eye movements and facial expression.
The first symptom, present at birth, is an inability to suck from the mouth. Other symptoms may include:
- Feeding, swallowing, and choking problems
- Excessive drooling
- Crossed eyes
- Lack of facial expression
- Inability to smile
- Sensitive eyes
- Motor (movement) delays
- High or cleft palate
- Hearing problems and speech difficulties
- Inability to move the eyes back and forth
‘Everything there was catered for Charley.’
Natalie hopes she can go on to raise more awareness of Moebius syndrome, as she and her family create more memories with young Charlee.
First described back in 1880, the disorder is extremely rare with just 2 to 20 cases per million births.
Most people with the syndrome are born with complete facial paralysis and cannot close their eyes or form facial expressions.
Natalie added: ‘Charlee is incredibly strong-willed and feisty, even though she can’t communicate she makes her feeling known in other ways.
‘We live in a world of 24-hour care so having everything taken care of for us which more than we could have imagined as a family.
‘It’s hard to think about what the future might hold so at this stage in her life, it’s so important for us to make new and lasting memories.’
Steph Sherwood, head of wishgranting at Make-A-Wish UK, has encoured people to support the charity so more young children, like Charlee, can make special memories.
She said: ‘These children face challenges that you and I can only imagine.
‘We see first-hand how a wish can provide respite and happiness from the daily challenges that having a critical condition can have.
‘The power of a wish brings light and joy to children and their loved ones during the darkest of times and help create magical memories that last a lifetime so people’s support to help us make these wishes come true is so vitally important.#
To help support Make-A-Wish UK make more magical wishes come true for the 63,000 children who have a life-limiting or life-threatening condition, please visit make-a-wish.org.uk.
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