I don’t normally start a post with photos, but this post is special. Clara is special. Under all that beauty and strength you would never guess the battle she faces every day. Below is her story written by her parents. Please take the time to read it. Then go back and look through the photos again. You’ll see what a hero she truly is!
“Nothing compares to the pain of losing a child. We discovered this with our first child, Drew Thomas. Our beautiful baby boy was born June 10,1999 and only survived one day. Not long after that we had our second child, Dawson Drew who was born healthy and strong. Then came our 3rd child, Gracie Rae, who was born still November 21, 2001. We will never be able to explain the heartache and pain that we suffered losing our second child. All we could do was turn to God, pray for strength and understanding, and take comfort knowing that both of our babies were with Him.
In 2006 we found out we were expecting our 4th child, Clara Grace. The news was so exciting but left us nervous and anxious as well. We were so happy and relieved when Clara was born, and everything went absolutely perfect! She entered this world screaming and weighed a whopping 9lbs 3 oz! She was beautiful, full of life and strong!
But things were not all as they seemed.
Soon after Clara’s homecoming we knew in our hearts something was wrong with our precious baby girl. She cried nonstop, could not be soothed, and was not gaining weight. We then discovered from her newborn genetic screening that she had a genetic mutation called Cystic Fibrosis. We were devastated with this news! Her mother had a cousin who died at the young age of 10 from this disease, and the thought of losing a 3rd child was almost more then we could handle. We prayed and researched. Then we prayed some more.
We immediately took Clara to get further testing to confirm the genetic findings and to seek expert help in treating this condition. Cystic Fibrosis is a genetic disease which causes the body to produce a thick sticky mucus that affects the lungs and digestive system. The average life expectancy is only 37 years.
Clara’s initial treatment involved hours of respiratory therapy and dozens of pills a day. It seemed to keep her symptoms of CF minimal for the first few years until she turned 5. That’s when she started to develop gastrointestinal problems. She now suffers from severe upper intestinal blockages that require numerous ER visits and hospital stays annually. She is facing the dark side of this condition.
But she is facing it with strength.
She is the strongest person we know.
She doesn’t even bat an eye at blood draws, painful tests and tons of doctor visits. This is all she has ever known, and she rarely complains.
Clara is now a first grader and is already learning that she needs to take extra precautions to stay healthy. She has helped educate her class of her condition, and as a group they came up with ideas to help keep her strong and healthy. She may be tiny for her age (smallest in her school at less than 40 pounds), but she is definitely mature and amazes all who know her. We are so proud of her! She loves dancing and singing and all girly things. But she also has a little side of tomboy that makes her unique! She loves her dirt bike just as much as her baby dolls!
Clara has taught us all how to love life and live it to the fullest, and to not take anything for granted. We thank God every day for giving her to us to love and to take care of. She even has good “healthy” days where everything seems to be working right. We get to see her vibrant, cheerful and sweet personality shine, and we almost forget about her condition.
Even though Clara faces a lifetime of uncertain health, she daily shows us the strength and courage it takes to be an inspiration.
We pray and remain hopeful that in her lifetime CF will stand for “cure found”.”