Andreas-Rares was born on the 5th of December 2013 and he was diagnosed with a very rare syndrome called Allan-Herndon-Dudley. It took us 8 months to find a doctor able to tell us what is wrong with our baby and we felt like our entire world collapsed when we found out.
There is no treatment for this syndrome and due to the fact that there are so few cases worldwide there is not much research done about it either. The little that it’s done is now focusing on chaperone cells and gene therapy, both of which are at their very early beginnings of their development and implying very high risks.
Until now we looked into every possible solution from drugs and brain delivery mechanisms to stem cells and found no definite cure. We are still looking and we will continue to do so for as long as it takes.
Andreas-Rares is working hard to gain as much independence as possible through therapies. He is doing two kinds of physiotherapy (Bobath and Vojta), horseback riding, cognitive and behavior development. We will also start shortly occupational therapy and swimming. His daily program is busier than the one of a corporate CEO’s but he’s doing a great job handling it.
We have joined the medical trial for Triac which is a medication believed to help children with AHDS. We do hope for the best but we are also aware of the fact that being an experimental medication there are potential risks involved. We keep the faith and hope it will make a difference for the better.
We are still managing his diet which needs to be high in proteins due to the hypotonic effect the syndrome has but also provide him with the extra energy he needs to go through the day.
There are other kinds of therapies though to be helpful for his condition and we would like to be able to try them and give him the opportunity to be the best he can. For that though, we need your support since we find ourselves unable to cope with all the expenses that his treatment requires.
If you can, please help us by donating.