My name is Tanja Brandt, and I am the Director of Family Support for the Arginase 1 Deficiency Foundation. My daughter was diagnosed with Arginase 1 Deficiency right before her 5th birthday in 2016.
It has been a bumpy road that started off with overwhelming worry due to the lack of knowledge and community. Overtime, we connected with other families in the ARG1-D world, and it felt like a weight had been lifted off my shoulders. These families had unique but still very similar stories, which was something I had never experienced before.
I was given hope, support, and unconditional love through these people and that is what we are hoping to provide to new families and individuals diagnosed with Arginase 1 Deficiency.