Annabella Marie Wright

Hi everyone. We are fundraising for our beautiful little girl who was diagnosed with a rare, terminal disease called Juvenile Tay-Sachs disease. The disorder destroys nerve cells in the brain and spinal cord, which progresses until it leads to death. She started showing symptoms at 1.5 years old and was diagnosed at 3.5 years old. She has just turned 5, but her disease has nearly fully progressed and she is now at the end of her life. We don't know how much longer we have with her, but she is on hospice care and they have given her a few weeks to maybe a few months. It's hard for us to tell because the good days give us hope for many more weeks but the bad days take away all of that hope.

We are asking for donations for a few medical expenses that we still have, the memorial services. Instead of having a funeral and burial, we decided to have her cremated and a tree dedicated to her at the Los Angeles Arboretum. That is where we were married and Annabella has enjoyed many walks and Christmas light shows. We have also decided to attend the National Tay-Sachs and Allied Diseases Association (NTSAD) 45th Annual Family Conference in Reston, Virginia in June. https://ntsad.org/events/annual-family-conference/. We plan on renting a large vehicle to drive Annabella's medical equipment to the conference. These medical devices will be donated to children within our community of rare diseases. The funds will help with travel expenses, as well as the admission fee and hotel stay. NTSAD has been an invaluable support for our family and we would love to be able to help other affected families.

I also wanted to acknowledge the people at Covina Valley Children's Center who have already generously donated last year over $2000 and gift cards that have helped us through this difficult time. We have also received multiple meals from family and friends, which have also significantly helped.