Hello, Bogdan is a beautiful and talented almost 9-year-old boy. He loves making his baby sister Demetra laugh, he likes to draw and paint, he loves horseriding he is a very curious and charmful boy.
Bogdan's story is the following: at the age of 7 years old, he was diagnosed with a very rare movement disorder "Progressive Generalised Dystonia" since then we are struggling to walk and to write, and it is becoming more and more difficult for him ...
This is a fact that changed the lives not only for him but also for us, his parents.
Bogdan has in-turning of both feet when walking, he complains of pains in his legs which stops him from walking.
He can only walk around 10 min. after that his leg is getting sore and painful.
Unfortunately, he is losing his ability to walk or write normally. (Now he is learning to type his homework for school)
He was going to school using his scooter & bicycle which he enjoys.
We have done MRI scans and genetic testing but doctors haven't discovered any cause.
Many instances of dystonia are idiopathic. (Idiopathic dystonia refers to dystonia that does not have a clear cause.)
I was at the "Dystonia Europe" conference in London to find out more information about this rare disease, and doctors around the world struggling to find a solution.
All that has been proposed to us at the moment, is a surgery in London, after which a chip should be inserted in his brain,
It is called Deep Brain Stimulation (DBS) but there is no guarantee that things could be improved as a result of this operation.
Another solution we found is a treatment in South Korea at the "Lee Young Jun Korean Medical Clinic" that is specialised in curing Intractable Diseases that are related to (Brain & Nervous-System Damage Disorders) including Dystonia, which we could benefit from in the near future because notwithstanding the pandemic, we were allowed to go with Bogdan to a clinic there.
I have studied their cases and talked with real patients that benefited from this non-surgical treatment, it has 85% success so hopefully, we will be one of them.
We are confident that we can make a change for our child, but we need you too!
We all know that the power of a community of people is great, so we ask for your help and we gratefully receive whatever you can offer: a good thought, a prayer or a sum of money.
There is no "much" or "little" when it comes to such causes, any small gesture is very important.
More "small" gestures will create a big thing that can help a child.
Thank you in advance for any contribution offered!
This fund will help cover some of the many costs associated with his treatment.
We will update this page regularly with Bogdan’s progress.
- Ion Samson
- Mariana S.
- Gillian Richardson
- Andrei Grozav