Daniel and Alexander
Best Friends Forever
Observing kids throughout many years, I came to believe that my sons' delays were not all I've been told; there was something else standing between my kids and their ability to become what they want to be. Daniel was born in 1994 as a beautiful, perfect, and healthy baby. When he was three years old, we accepted that he was somewhat behind other kids. It was nothing that we couldn't handle at that time, because he would soon catch up, as we were told. We had a great support at school, community and private therapists. He worked very hard to become a normal kid. We started noticing the same problems with Alexander when he was a little over one year old. From that moment on, we knew that our boys did not have just allergies, infections, low muscle tone, diarrhea, short attention span, etc. It was something else that was taking our kids life away from them, and taking them from us. We started the search for the answers.
Both Alexander and Daniel were given a diagnosis of Autism and ADHD at the age of 6. Years of treatment and therapies did not produced significant improvement. Finally, we turned to genetic testing. When we learned the correct diagnosis in 2012, it devastated us. It took us 16 years to learn that our children have Aspartylglucosaminuria (AGU), a rare fatal disorder. During sixteen years spent looking for an answer, we never had a doubt that when we found it, we could cure our boys and give them a chance for a normal life. Unfortunately, when finally we knew the problem, no one could not help them!
The inspiration came from Alexander, our intuitive little Spiderman. One day he said: “Mommy, don’t cry. Let’s watch a movie!“. Of course it was a Spiderman movie, the one that ends with the phrase:”With great power comes great responsibility.” After the movie Alexander asked me: ”Why responsibility comes with power?” At that instant I knew the answer! Because I have the power of knowing what’s wrong with the kids, now I have a great responsibility for these two human beings and all the others to find the cure!