Today I have a special treat. I interviewed one of my friends Taylor that has a daughter with Bohring-Opitz Syndrome. Read more about their journey below.
Tell me a little about yourself. How many kids do you have? How old is your child with special needs? What is their diagnosis?
I was born and raised in North Eastern North Carolina. I have a B.S in Elementary Education from East Carolina University with Middle Grades Mathematics add-on . I have always had the passion to better the lives of children. I’m a mother of two girls, Talynn (3 years old) and Tinlee (1 years old), and wife to Chad Gurganus. I teach at T.S. Cooper Elementary School Talynn was born with a rare genetic syndrome called Bohring-Opitz Syndrome. I have pushed to raise more awareness for her daughter and BOS. I am the Co-founder and Vice Chair for the Bohring-Opitz Syndrome Foundation.
What are the challenges you face as a parent to a child with special needs?
Some of the main challenges we face is getting Talynn the services she deserves. I feel like as a mother with a medically fragile child, fighting for Talynn to live should be enough. However, that is not the case… we have to fight for nursing services, various equipments, etc. All of which are supposed to help improve my daughter’s quality of life.
Do you ever feel overwhelmed?
Of course! I am a mother of two children under the age of 3. I just have learned to let go of what I cannot control, fight hard for what I know is right, and love my kids everyday.
What things have you found to enjoy about having a child with special needs?
Talynn is a true blessing to our family. She has shown me that although she may cannot talk or walk she still has a personality. We know she can hear us, we know she loves us, and we know we are doing everything to make sure she has the best life possible.
What does your child enjoy doing?
Talynn LOVES being able to roll around on the floor. She loves lights, being outside, and people interacting with her.
What treatments or therapies have been successful for your child?
Talynn has receives many therapies. All of which I believe have helped improve her development. She receives physical, speech, occupational, and vision therapy. We do both in home and outpatient therapy.
What concerns do you have for your child’s future?
The uncertainty. We live life day by day as we do not know when Talynn will take her last breath.
Today is Bohring-Opitz Syndrome Awareness Day. Find out more below.
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