From Ava’s Mother (written prior to Ava passing away)

Ava was 3 on December 31, 2016. She is a beautiful little girl with strong will to live. She amazes us daily and is a blessing to have in our lives. She was a normal baby till she turned about 10 mths old we noticed a difference in her. Her left eye was lazy and her head drooped then she stopped babbling and clapping around 12 months old. We got a diagnosis on March 17, 2015.  Beginning in 2016, were some very hard years. Ava and our family went through a lot of changes that were happy, sad and scary. She is now in hospice, and on full-time oxygen and pulse/ox.  She needs suction, a feeding tube and I am her mother and her full-time caregiver. She can not move has lost all muscle tone.  She can not do anything for herself and she has also lost most of her vision.