At the age of 1 1/2 Ava started to develop chronic pain and itching to where she picks at her skin and has created scars all over her body. She was diagnosed with a mutated gene called SCN9A. She has been hospitalized multiple times, and has had to see multiple specialist for medical care throughout her whole life. This hospital stay was because she developed septic shock and strep pneumonia. She has been in the hospital now for a month and it is unknown when she will be well enough to be discharged. She has been in the PICU For two weeks now. She currently has a breathing tube inserted, a tube in her rib connected to her lung to drain out the infection, she has an IV in her neck and has been under sedation for a week and a half now. She also deals with, on a regular basis, growth hormone deficiency, Erythromelalgia, anxiety, multiple fractures from low bone density, and carpal tunnel. With all of her medical expenses, transportation back-and-forth to the hospital everyday, it has created a financial burden and we are in need of support. Ava has such a great personality, and I say this, not only because she is my child but because she can truly light up a whole room with her charisma, humor, smart responses, and her enlightening smile. She is full of life despite all that she has endured throughout her life. My mission in life is to be able to provide for her, protect her from sickness, and to create ways to make her feel as comfortable and happy as possible in every way that I can. Thank you in advance for any financial support and or for just reading about our story and praying for our Ava. I send you all love and light. ♥️
New update on Ava, she is now at home and doing better. She still struggles with withdrawals and has to be taught to do things like washing hands, going to the bathroom, eating, talking, and walking. This will require a lot of therapy and support and love from family and friends but with the support of everyone I know she will get through this. Sending love and light to all!