On August 1, 2014, the world changed for all of us. Miss Claire was born after a 41 week pregnancy! She was a blue eyed, curly haired beauty, and the sun shone a little bit brigher. However, the first three and a half weeks of Claire's life were scary and frustrating. She wasn't eating. She had trouble latching, didn't seem to be swallowing, and what she ultimately swallowed, she lost due to reflux. She was at the doctor multiple times a week, with seemingly no good answers or solutions. Finally, at 3.5 weeks old, and after severe malnutrition that nearly cost her life, she was admitted to a pediatric hospital for failure to thrive. While admitted, she was diagnosed with Moebius Syndrome. This condition is an extremely rare neurologic disorder that affects several cranial nerves, causing paralysis (immobility or weakness) of the muscles of the face, in addition to many other possible disabilities and ailments. This explained the absence of her left hand, and the abnormalities on the right hand. It explained her clubbed feet. It explained the inability to suck. It explained why she wasn't blinking, smiling, or displaying any sort of emotion. It was an even more difficult diagnosis to receive and was an incredible blow.
We learned about Moebius Syndrome; read everything we could get our hands on. Lee and Audrey (Claire's mom and dad) became some of the strongest people I've ever met in my life, seemingly overnight! We still aren't sure how many, or what all cranial nerves are affected, and what types of difficulties may present themselves along the way. However, Miss Claire has managed to capture the hearts and adoration of more people than we could possibly imagine.
She's had multiple leg castings and a surgery to correct her clubbed feet, and will wear a brace for quite a while. We know that someday she can have a surgery to correct the affected fingers on her right hand. She also may, or may not, end up with a prosthetic for the missing left hand. She currently has multiple therapies that will be ongoing for quite some time. But the biggest of all, will be the day that we finally gather enough money to give her a "Smile Surgery", which are two separate, very involved surgeries (one for each side of her face) done between the ages of four and seven years, that will allow that heart-melting giggle to spread all the way across her face. In this facial re-animation surgery, a piece of thigh muscle is transplanted to connect the corner of her mouth to her cheek bone.
Currently, Claire's facial re-animation, or "smile surgery", has been quoted at $60,000 per side. We will be doing a LOT of fundraising and creating a Smile Surgery Fund, because the surgeries are SO costly. Her mom and dad (Audrey & Lee) are the most loving, humble people. God certainly placed Miss Claire with the absolute perfect parents. We all want you to know that prayers are the very first thing that we ask for, but I ask you to consider donating to her Smile Fund, and pass this site along to anyone! Please know that any amount helps... it all adds up. We cannot express our thankfulness to you, whether it's a dollar, significantly more, or prayers alone. There is nothing on Earth more beautiful than a baby's smile. We can't wait for the day this precious angel looks at us for the first time with a smile to match her heart.
Thank you for being a part of Claire's Smile Fund!
(this narrative written by several people who love Lee, Audrey and Claire)
- Vanessa Hertich
- Jessica Penrose
- Chelsea Burgess
- Andrea Elliott
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