Grace Korba is an adorable 20-month old who inspires everyone around her, especially her mother. “She brings so much love to our life,” Candice Streebel says of her daughter, “She teaches us to never give up.”
As Candice explains, it’s been a long road for her family. “When I was pregnant with Grace, we were told after very detailed testing that she would more than likely not make it to delivery. Her brain scans were so abnormal. After a second opinion was had, it was decided that more than likely Grace would be born and would need to spend a lot of time in the NICU and require machines to live.”
The family agreed that fighting was their only option. They bought superhero capes and stayed motivated for their super fighter, “After delivery, the NICU team decided that Grace was healthy enough to go to the floor with me and it was one of the best moments of my life. Bottle feed, no breathing machines, as typical baby as a newborn could be.”
Soon things changed and there were many specialists, tests, procedures and prayers. Genetic tests showed baby Grace has Lissencephaly 3.
Candice recalled a story Totally Buffalo did on a baby who also had a very rare disorder called Walker Warburg, “When you did a story on Evan, I immediately reached out to her. I have done extensive research on WWS. Once home, we immediately started with Early Intervention.” It helped to know they were not alone.
Grace currently receives Occupational Therapy and Physical Therapy. She is legally blind and has seizures, “Her brain stem is also underdeveloped, deformed and disorganized. Your brain controls your entire body. We have a specialist in almost every speciality you can have. She is followed by doctors in Buffalo, Rochester and Boston MA in their bridge clinic. She has a severe seizure disorder and many different types.”
Grace is on oxygen, many different medications and is fed through a tube. She struggles. And she smiles, “Her diagnosis is life limiting but we choose not to focus on that. No one has a crystal ball and can say for sure what our future holds. Everyday with anyone you love is a blessing. After having the conversation we had with the first doctor everyday is a gift with her, with all of our children.”
In Grace’s house they never say never. They never give up hope and they never lose faith. Not ever, “Grace was given to us because we will continue to do anything we can for her. We will do what it takes for her to reach her best potential. She does not hold her head up, talk, walk etc. Being realistic, she more than likely never will. We never say never in this house. She is here. She does turn her head to our voices and smile. She just started giggling when tickled. She accepts your love when holding her and nuggles right into you.”
As you can imagine, caring for Grace is challenging – emotionally and financially. Many products they need are simply not covered by insurance. Grace’s mom and dad work full time and care for two other children in the home – Emily, 14 and Elizabeth, 2.
Candice is selling t-shirts and these amazing swag lights to help pay for some special items for Grace.
You can order or make a donation here:
You can find more information and follow along on Grace’s journey on their Facebook page HERE. Send a message if you would like to place an order!
Another wonderful, inspirational Western New York family reminding us what is truly most important in life – family.
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