Hello, my name is Shantre, the mother of Miss Ava Kennedy. Ava was born a beautiful healthy girl. Around 6 months of age, I noticed Ava stopped hitting her milestones. When I brought this issue up to her doctor’s attention, he brushed it off and tries to assure me that she is a late bloomer and things will be fine. Fast forward to 10 months of age, we move to Louisiana where her new pediatrician noticed the signs of a genetic disorder and got to work with testing and referrals immediately. January of 2021, Ava had her first seizure and things have gone down hill ever since. She lost her vision and mobility and ability to eat solid foods and from a bottle. She is heavily dependent on tube feeds. She was diagnosed with PEBAT disorder which causes brain atrophy and brain shrinkage. Ava has been on hospice now for a few months and is on a downward decline. Her organs in the beginning process of shutting down. I want to be able to give my daughter the comfort she needs while she is still here and the celebration of life she deserves. My goal is to be able to bring her home to California to be in the presence of love with family and friends. Anything helps, even if it’s just a prayer. Thank you!