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Andreas-Rares Association was created for our son, Andreas-Rares who was diagnosed, at the age of one, with an ultra rare genetic syndrome called MCT8 Deficiency also known as Allan-Herndon-Dudley Syndrome. Our entire world came crushing down with his diagnosis.

MCT8 deficiency is a genetic disorder that only affects boys. Affected children struggle to support their heads, are affected by hypotonia, severe mental and motor delay and the subsequent health complications may lead to early death. MCT8 Deficiency (Allan-Herndon-Dudley syndrome) has no cure and no treatment to this day. Orpha.net portal approximates a total of 320 patients all over the world (2016 data).

 

This syndrome is virtually unknown to medical professionals. That, along with the fact that a definitive diagnosis involves genetic testing which is not reimburse by most countries, makes it all the more difficult to diagnose. As a result lots of patients are being misdiagnosed and the actual incidence of the syndrome is not fully known.

What happens in MCT8 Deficiency?” Is a short animation explaining the very rough mechanism of the syndrome.

Andreas-Rares diagnosis was one of those few moments in life that shaped our future. We had two big options in front of us: either accept the situation as a given, retain no hope and give up the fight OR stand up, stand our ground and fight for his feeble chance of rehabilitation, however long and difficult that road may be.  And this is how our journey began.

 

Little Sundrop and the Unnamable Terrible Evil” is a story for children that illustrates our diagnosis journey.

We started reading extensively about anything and everything that could help him, even remotely connected to his struggle. We acquired knowledge and expertise in areas we had never known to exist before: pharmacokinetics, disease mechanisms, drug delivery systems, several kinds of therapies, special needs equipment, building our own special needs equipment designed for his particular needs and so on.

Andreas-Rares started therapies at a very early age and we have increased the number of sessions steadily as his muscle tone and energy levels allowed for it. All these therapies are meant to delay the onset of severe symptoms and increase his quality of life. However, we never stop hoping for progress and he never disappoints. This is why he is our superhero! No mountain is too high for him!

 

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Andreas-Rares Association

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