Finley Raine Engnell has been a fighter from the start. Finley’s middle name is Raine, because she is our “rainbow baby”. She was born after the loss of our second child. Finley spent her first week in the NICU fighting a lung infection and dangerously high levels of jaundice.
After coming home, Finley never stopped fighting. She started developing as any beautiful baby girl would, smiling and laughing. At about 9 months old we noticed a dramatic decline in Finley’s growth/weight gain and she was not meeting milestones along the way. Finley started with early intervention at 15 months and began walking at 18 months.
Still something didn’t seem right. It seemed that instead of building on her new skills she was simply replacing. Every time she would say a new word, the old word was “lost”. With the help of our pediatrician we started what seemed to be a never ending journey for a diagnosis.
We went through test after test trying to figure out what was wrong with our sweet girl. It broke our heart to watch her go through each and every procedure. We were desperate for answers and were determined to get them so we could provide her the best care possible!
Finley has therapy 8 times a week, over four days, along with all of her specialists’ appointments, and regular checkups. We have an extensive plan in place for Finley which includes physical therapy, speech therapy, occupational therapy, developmental therapy and aquatic therapy. We are hopeful these services will help her continue to gain strength and skills and battle to maintain the skills she has. We are in the process of teaching her to use assistive communication so she can have an outlet to express herself and let us know her needs. It’s so difficult to not be able to know how to help her at times and we hope this will help prevent a lot of frustration for her.
Finley is a gentle soul and persistent fighter! She has not let this debilitating disorder take away her spark. Although we have only heard a few words, she has now lost all of her speech and most of the signs she once knew. Nonetheless Finley has taught us that love is universal and it doesn’t need words to be shared. In spite of this, we still want nothing more than to hear her voice! We want our girl to be able to give us kisses and hugs again. We hope for her to continue gaining her strength, mobility and hand function. This is a daily battle and right now there is no cure. Though this will be a lifetime battle, we are committed to keep her as strong, comfortable and happy as possible and will do everything in our power to give her the best quality of life!
Our hope and trust lies with all of the scientists and doctors working on a cure! We need all hands on deck to help fund the research to find a cure, as well as help us provide the best life possible for Finley.
Please visit Rettsyndrome.org for more information about Rett Syndrome and how you can help change our girl’s and countless other’s lives.