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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

Nevaeh lying down

Nevaeh was born after a normal pregnancy at 39 weeks. Afternurses noticed she wasn’t crying like you might expect, but instead making ahumming sound and had little interest in eating, Nevaeh was transferred tothe Neo-natal Intensive Care Unit for observation. Five days later, wewere discharged with few answers and a lot of questions. Less than a weekafter being discharged, we returned to the hospital concerned about her lackof appetite and after blood tests, a spinal tap, and metabolic panels we stillhad no answers. After consulting with doctors it was decided that a feedingtube was the next step. The day they put the feeding tube in, doctors alsodid a muscle biopsy. After four months in the hospital, we had ananswer. 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 swallowher own secretions and her airway was being blocked. Shortly after her diagnosis, shehad a trach placed to help her maintain her airway and was placed ona ventilator. Nevaeh finally came home in April of 2017 after wereceived training for her trach care and set up with a portable ventilator.Neveah was doing better health wise though other areas of development werebehind.Hospital staff helped us get connected to the TN Early InterventionSystem and Siskin Children’s Institute and within weeks of being home, aDevelopmental Therapist from Siskin started coming to our home and also connectedus to a Physical Therapist that provided home services as well. 

Because of Siskin, I am learning how I can help Nevaeh learn to communicateand play in different ways. Our therapists are always there to listen andprovide resources and information when I need it. Nevaeh is beginning toexperience herworld differently because of the resources and equipment we’vereceived from Siskin Children’s Institute including adaptive toys, switches, andvoice output devices that are part of the UNUM funded lending library. Her newadapted seat allows her to be more mobile and participate more with the family.Nevaeh’s brothers were particularly excited about the incredible toys that havebeen adapted and switches modified so that Nevaeh can activate them! Herbrothers 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 blessingand while we have a long road ahead, I can’t wait to see what the futureholds...

 -- Britney, Nevaeh's Mom