Child with extremely rare Möbius syndrome gets “vacation dream”
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 condition that affects around 200 people in the UK.
It causes facial paralysis and weak upper body muscles that severely limit movement.
Through intensive work with doctors, Charlee learned how to roll, sit and hold her head up at the age of three.
Now six, from Hemel Hempstead, she also enjoys going to school, where her teachers describe her as “fierce”.
Charlee’s mum Natalie told Metro.co.uk: “She was born very limp, like a rag doll, so she was taken away very quickly for blood tests and a brain scan.
“It was such an incredibly challenging start to her life. They found spots on her brain, she showed no facial movements, and one of her kidneys had not developed properly.
“Very little was known about the condition so we were all very afraid of what was happening.”
Natalie said Google was both her “best friend and worst enemy” when she found out the disorder affects between 1 in 50,000 and 1 in 500,000 newborns worldwide.
Charlee, who is non-verbal, loves to spend time at home watching Disney movies – with appealing bright colors.
So her family was delighted when they heard from a case worker that she had been nominated for a Make-A-Wish UK Dream Come True.
Charlee, father Stephen, mother Natalie and sister Darcy have been whisked away to Disneyland Paris for a once in a lifetime experience.
Natalie said: “The trip to Disneyland Paris was absolutely wonderful and more than we could ever have hoped for.
“Charlee is nonverbal, but as parents, we could feel the utter joy she had from meeting the Disney characters, seeing all the colors and hearing all the music.
“We’ve taken them on holiday before, but only in England – and I always have a lot to think about and pack so much in the car.
“For Disney, we were picked up, put on the Eurostar, greeted at the other end – it was just a load off our shoulders.
What is Moebius Syndrome?
Mobius syndrome is a rare birth defect that primarily 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 that control eye movement and facial expression.
The first symptom present at birth is the inability to suckle from the mouth. Other symptoms can include:
- Problems with feeding, swallowing and choking
- Excessive drooling
- crossed eyes
- Missing facial expression
- inability to smile
- sensitive eyes
- Motor (Motion) Delays
- High or cleft palate
- hearing problems and speech difficulties
- Inability to move eyes back and forth
‘Everything there was taken care of for Charley.’
Natalie hopes to continue raising awareness about Moebius Syndrome as she and her family create more memories with young Charlee.
First described in 1880, the disease is extremely rare, with only 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, although she can’t communicate, she makes her feelings known in other ways.
“We live in a world of 24-hour care so we’ve taken care of everything, which is more than we could have imagined as a family.
“It’s hard to think about what the future might hold, so at this stage of her life it’s so important for us to create new and lasting memories.”
Steph Sherwood, Head of Wish Fulfillment at Make-A-Wish UK, has encouraged people to support the charity so more young children like Charlee can have special memories.
She said: “These children face challenges that you and I can only imagine.
“We see firsthand how a wish can provide respite and happiness from the daily challenges that a critical condition can bring.
“The power of a wish brings light and joy to children and their loved ones through the darkest of times, helping to create magical memories that last a lifetime.
To support Make-A-Wish UK in making more magical wishes come true for the 63,000 children living with a life-limiting or life-threatening condition, please visit make-a-wish.org.uk.
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https://metro.co.uk/2023/01/28/child-with-extremely-rare-moebius-syndrome-gets-holiday-dream-18173328/ Child with extremely rare Möbius syndrome gets “vacation dream”