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Happy Rare Disease Day

28 Feb 2019

 

You’re 2 in a million, Harry. It’s okay to be unique. It’s okay to be you.

 

Harry has come on leaps and bounds in the last year. He’s even started a couple of days a week at nursery!

 

We're marking Rare Disease Day with a topical trip to Southampton Hospital for a neurology appointment. We’ve recently learned that smile surgery is a thing.

 

Many people with Moebius undergo the surgery, helping them to show off their pearly whites. What a day that would be, to see the little man smile.

 

But it's one step at a time. And for now, we're working on sitting unaided. You're doing great, Harry. Keep on trucking.

 

Happy Rare Disease Day to everyone from our resident pickle monster, Harry.

 

Moebius syndrome is a rare neurological condition that affects facial expression. Harry cannot smile, frown, or raise his eyebrows. He has severely low muscle tone and has problems with feeding. He gets his nutrition via a PEG tube and will need to keep it until the day he may be strong enough to eat orally.

 

Moebius syndrome also affects the muscles that control back-and-forth eye movement. But the clever little sausage is still able to follow stories by moving his head side-to-side. He loves turning the pages.

 

Affected children often experience delayed development of motor skills (such as crawling and walking), although most eventually acquire these skills. Most people with Moebius have normal intelligence.

 

Up to 1 in 500,000 people are born with Moebius. Most cases are sporadic; they occur in people with no history of the disorder in their family. More research is needed to find out what causes this rare disease – it’s still largely unknown. Thank you to everyone that’s involved in progressing the field of rare diseases.

 

#RareDiseaseDay #MoebiusSyndrome #MightyMoebius #TheBearAndTheBees #EllaRichardson

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