Sunday, October 25, 2015

Faces of Spina Bifida: Meet Kyra and Jacob!



Meet Kyra
5 years old

How does Kyra describe herself: Laughing

What does Kyra most like about herself?

 "That I am nice and silly."

What do you know now that you wish you had known when you first heard the SB diagnoses?

"I wish I had known that Kyra would live and she would have a wonderful quality of life. Kyra was diagnosed at our 20 week ultrasound with Spina Bifida and possible VACTERL Syndrome (which she has). We were offered a very poor prognosis and termination as an option. Even though I couldn't see God's plan at that moment, I had faith that he had one. I may never know all the reasons God chose for Kyra to have Spina Bifida and VACTERL Syndrome, but I am sure glad he chose us to be her parents. It has not always been easy and there have been many challenges, but it has all been worth it. Our journey with Kyra has shown me, beyond a shadow of a doubt, that there is a God and he is guiding us. Kyra's personality is a bright light and she affects and inspires all who know her. I am sooo proud to be her "mama bear"."




Meet Jacob
8 years old


Describe Jacob in one word: Spunky

What does Jacob most like about himself?

"Jacob loves his hair! Every time he gets a haircut he thinks he looks sooooo handsome!"

What do you know now that you wish you had known when you first heard the SB diagnoses?

"As a parent of a child with Spina Bifida I wish I would have known that everything would be just fine."
What makes Jacob awesome?

"Jacob has brought so much joy to our family. He has humbled me in so many ways I can’t describe. He is one of the happiest boys I know with so much love and energy to give to anyone. He has a passion for music and the most incredible rhythm. The absolute most awesome thing about Jacob is, his ability to inspire people. He has had a great deal of challenges throughout his life and as he continues to overcome each challenge he touches lives. He is simply a blessing!"





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