Hi! I'm Andreas-Rares and I'm 5 years old. I have been diagnosed with an extremely rare genetic syndrome called Allan-Herndon-Dudley ( MCT8 Deficiency). Doctors didn't give me much chances of anything when I was diagnosed but boy did I prove them wrong. I can sit and crawl; I laugh and I play; I place steps with help and I even go to the kindergarten!
I know my parents are very proud of my progress but I also know the effort and the expenses this progress came with: lots and lots of therapies, special equipment, experimental medication and a lot more.
The medication I'm taking increased its price four (4) times in the last year alone and that is my only chance of getting just a bit better. I'm growing out of some of the equipment I'm using and that will need changing and I need new splints for my legs.
Most importantly though, I met some doctors that promised they will figure out why I don't eat and maybe help me solve this problem. Their hospital is in a far country and we'll need to be there for a while so I guess that is going to be a big expense for my parents.
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