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Nevaeh's Story


"Because of Siskin, I am learning how I can help Nevaeh learn to communicate and play in different ways. Our therapists are always there to listen and provide resources and information when I need it."

--Britney , Nevaeh's Mom




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Nevaeh was born aft er a normal pregnancy at 39 weeks.  After nurses noticed she wasn’t crying like you might expect, but instead making a humming sound and had little interest in eating, Nevaeh was transferred to the Neo-natal Intensive Care Unit for observation. Five days later, we were discharged with few answers and a lot of questions. Less than a week after being discharged, we returned to the hos pital concerned about her lack of appetite and after blood tests, a spinal tap, and metabolic panels we still had no answers. After consulting with doctors it was decided that a feeding tube was the next step. The day they put the feeding tube in, doctors also did a muscle biopsy. After four months in the hospital, we had an answer. Nevaeh was diagnosed with Congenital Fiber Type Disproportion (CFTD) Type One, a rare genetic muscle disease that affects the skeletal muscles. 

 
In Nevaeh’s case, her muscles were so weak she was unable to safely swallow her own secretions and her airway was being blocked. Shortly after her diagnosis, she had a trach placed to help her maintain her airway and was placed on a ventilator. Nevaeh finally came home in April of 2017 after we received training for her trach care and set up with a portable ventilator. Neveah was doing better health wise though other areas of development were behind. Hospital staff helped us get connected to the TN Early Intervention System and Siskin Children’s Institute and within weeks of being home, a Developmental Therapist from Siskin started coming to our home and also connected us to a Physical Therapist that provided home services as well. 
 
Because of Siskin, I am learning how I can help Nevaeh learn to communicate and play in different ways. Our therapists are always there to listen and provide resources and information when I need it. Nevaeh is beginning to experience her world differently because of the resources and equipment we’ve received from Siskin Children’s Institute including adaptive toys, switches, and voice output devices that are part of the UNUM funded lending library. Her new adapted seat allows her to be more mobile and participate more with the family. Nevaeh’s brothers were particularly excited about the incredible toys that have been adapted and switches modified so that Nevaeh can activate them! Her brothers can play alongside her, but she can be the one to start the fun! 
 
It has been wonderful. Siskin Children’s Institute has been a true blessing and while we have a long road ahead, I can’t wait to see what the future holds...
 
 -- Britney, Nevaeh's Mom