Special Education Week - Day 3

I had very tough day last september dealing with NR with high fever and he was not willing to eat or drink fluids. I was so tired, sad and scary and went into little depressed mode thinking about the all challenges ahead of us. I switched on the TV, when NR took his afternoon nap and this programs comes in discovery channel.  Parents with unconditional love . It was such an inspirational story , I was so determined not to lose focus and never to lose my positive attitude not even for a minute.  When these parents can do an amazing job , our challenges with NR are nothing compared to this little amazing girl.  I always believed that god gives me experiences in life which I can handle .  You can watch the video here

Local Family Has Daughter Born Without a Face

Tom holds his daughter, Juliana

Tammy

Juliana is missing 30-40% of the bones in her face.

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By Jeannie Blaylock, First Coast News

JACKSONVILLE, FL -- When most parents have a baby, they spend months dreaming about what their bundle of joy will look like. Will she look like mom? Will he have dad's eyes? But for one local Navy family, the birth of their daughter didn't give them the answers to those questions. Their daughter was born without a face.

When Tammy was pregnant, she knew something was wrong. At worst, they thought maybe their baby had a cleft lip. So Tammy and her husband Tom went to the hospital happy until the birth.

"The nurse is like, 'We got her stable, we need to rush her upstairs,'" explains Tom, as he recalls every minute of that day. "And the nurse asked, 'Do you want your wife to see her now?'"

Tom says he thought to himself, "Before she gets the shock I did, let me take a picture so she's prepared."

Tammy hadn't seen her new baby yet, because she almost bled to death during delivery. Tammy would be okay, meanwhile, dad went to take pictures of his new daughter. But no matter what, these new parents had a wish.

"That if there was something wrong, she wouldn't be alone. We wanted to make sure she felt loved," said Tom, as he began to cry. "She squeezed my hand."

Little Juliana is missing 30 - 40 percent of the bones in her face. "She has no upper jaw, no cheek bones, no eye sockets, and she's missing the corner of her ear," explains Tom. Her birth defect is called Treacher Collins Syndrome.

Doctors say it's the worst case they've ever seen. So, how do you get people to see past all the defects, and find her heart? For mom, it just hurts.

"I just wish people would ask questions. Don't just stare," says Tammy. "I guess the most hurtful thing came not long ago, a little girl said she was disgusting."

Juliana has to eat through her stomach, and she has a trach to breathe. Already, less than two years into her life, she's had 14 surgeries. Doctors say she could need at least 30 more. Every time she goes to the hospital, doctors make a mold of her head, and then reconstruct her skull to figure out the next step. It's a life-long process that's draining for Tammy and Tom. Even still, they're thankful and full of love for their sweet child.

"God never gives you more than you can handle. I figure she has a lot to show everyone... to show the world," says Tom.

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