Welcome to my Journey…..

Only a few 100 cases Worldwide and that number is increasing, A rare often fatal nervous system disorder. This site is about our Precious Little Girl that lives her life with a rare disease called Alexander’s Disease. Read about her Struggles, Accomplishments, and the Hope we all have for our dear little Girl.

Our Precious Family

Our Precious Family

I am the “special” child. I am your teacher. If you allow me, I will teach you what is really important in life. I will give you and teach you unconditional love. I gift you with my innocent trust, my dependency upon you. I teach you about how precious this life is and about not taking things for granted. I teach you about forgetting your own needs and desires and dreams. I teach you giving. Most of all I teach you hope and faith. I am the “special” child.

In my mind, I am very brave. I can do anything. I fly like the wind. I am amazing. In my mind, I roar like a lion. I have lots of friends. I am 10 feet tall. In my mind, I have a lot to give. I make my mom, dad and brother smile. I am never afraid. In my mind, I am always smiling. I am a champion. In my mind I am full of dreams. I win every race. In my mind, I am very brave. I can do anything. I fly like the wind.


                    You may email me at MyTink619@comcast.net if you would like to.

fight like a girl