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Sarah Halstead

You are here: Home | Special Needs | Talynn’s Journey: Bohring-Opitz Syndrome Awareness Day

April 6, 2017 By Sarah Halstead

Talynn’s Journey: Bohring-Opitz Syndrome Awareness Day

Filed Under: Special Needs

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.

Want to be featured on my blog? Contact me.

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I'm Sarah and I am the writer behind this blog. I love sharing recipes, DIY projects, photos and about my everyday life. I married my high school sweetheart Kenny. We have three boys and one baby girl - Dustyn, Carsyn, Prestyn, and Annelyn. Thanks for stopping by, can't wait to get to know you more. Read More…

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22|365 these two are a mess, but a cute mess. #p 22|365 these two are a mess, but a cute mess. 

#prestynjames #annelynjane #halstead2021 #project365 #project365_2021 #siblingsbelike
21|365 Trying on glasses. She loved these ones. He 21|365 Trying on glasses. She loved these ones. Hers should arrive in a week or two. 

We saw a third eye doctor. We are going to try glasses for two months and also try to prevent her from closing or covering her left eye. Along with having her focus on something brought to her nose throughout the day. Then recheck. She did mention alternate patching. Even though they see it in both eyes it is more prominent in her left eye. If neither one is helping then we will do surgery. 

#annelynjane #halstead2021 #project365 #project365_2021
20|365 Annelyn did amazing at the allergist today. 20|365 Annelyn did amazing at the allergist today. I felt so bad when they were poking her back. I shared a photo in my stories of her back. They tested for dairy, eggs, green beans and pork. She previously had a reaction to green beans and bacon so they wanted to check that. The dairy and egg still had a reaction, but the doctor feels it is small enough that we can start trying eggs and dairy in small portions. Her egg reaction is a little less than dairy so we are going to try that first. 

I let her pick out a toy and she picked this baby yoda.

#annelynhalstead #halstead2021 #project365 #project365_2021 #babyyoda #allergytesting #dairyallergy #eggallergy #toddlermomlife #toddlerfoodallergies
19|365 Another evening spent outside. Used my new 19|365 Another evening spent outside. Used my new Note 20 Ultra for this photo. Going to use it for a bit to be double sure I am ready to move to the dark side. 🤣 

#carsynjoseph #halstead2021 #project365 #project365_2021 #holoprosencephaly #hope #specialneeds #exceptionalchild #cerebralpalsy
18|365 Prestyn and Annelyn hanging out together. T 18|365 Prestyn and Annelyn hanging out together. This doesn’t happen often but lasted a good 10 minutes. I had to capture a photo. 

#prestynjames #annelynjane #halstead2021 #project365 #project365_2021 #brothersisterbond #brothersistergoals #motherhoodunplugged #toddlermomlife #jellycat #jellycatbunny #jellycatsofinstagram
17|365 Annelyn found a flower and was so excited. 17|365 Annelyn found a flower and was so excited. Swipe to see the cutest little scrunched nose. 

#annelynjane #halstead2021 #project365 #project365_2021 #getoutside #getoutsideandplay #dandelion #toddlermomlife
16|365 Mocha hanging with his best friend. **For 16|365 Mocha hanging with his best friend. 

**Forgot to post this yesterday. 

#mochachippuppuccino #halstead2021 #project365 #project365_2021 #goldendoodle #f1bgoldendoodle #merlegoldendoodle #chocolatemerle #mediumgoldendoodle #moyengoldendoodle
15|365 Enjoying the nice weather. #carsynjoseph 15|365 Enjoying the nice weather. 

#carsynjoseph #hastead2021 #project365 #project365_2021 #holoprosencephaly #hope #cerebralpalsy #specialneeds #exceptionalchild #getoutsideandplay
14|365 Sweet girl. Little update we are going for 14|365 Sweet girl. Little update we are going for a 3rd opinion next week at an office that offers vision therapy. I am going to see if they think therapy and/or glasses would help. I’m hoping that it will be an option since she is able to control it when we get her to focus. We will see. 

Thanks for all the advice and sharing your experiences. I know every child and diagnosis is different but it is nice to hear what others have done. 

#annelynjane #halstead2021 #project365 #project365_2021 #strabismus #toddlerstrabismus #strabismussurgery #visiontherapy #strabismusvisiontherapy

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