I am new here. I am a carrier ALD female, I am 32 years old and I have a son, Jan, he is 4 years old and he is a carrier ALD too
I live in the south of France so, please, excuse my very bad English, I do my best to be understandable.
Since I knew this diagnosis I feel very sad and guilty for my son, because it is my fault, I passed the wrong gene to him. Before I was pregnant I did not know I was a carrier of ALD.
Monday 9th of décembre we did a IRM ( cerebral picture) to my son. Today He has nothing (Thank you God). This week we will go to Paris, at the Kremlin Bicetre Hospital in order to see a specialist of ALD, the Doctor Sevin. I hope I will hear good news about a possible gene therapy in the future.
The disease started with my own mother, she was born on 1967. The first symptoms were a deterioration of left eye 's sight, so the doctors thought my mother had a multiple sclerosis.At this moment my mother had 35 years old.
Unfortunately it put the real diagnosis behind...
Now my mother is 52 years old and she can not walk without a crutch. We knew the name of my mother's disease in 2016: Adrénoleucodystrophie liée à l'x ( in french)
Please can you describe me your feelings about the potential disease or disease of your Children.
I read David Cry's book "a little walk to home" ( I am not sure of the title, sorry) where he describes his feelings of Dad confronted to the disease of his son.
Did you know interesting books about this subject?
I feel very alone...
I wish you all the best