Every child is beautiful, unique and a blessing from God. All children should be loved and respected but once in awhile a child comes along that just steals our heart at first glance. A very special unique child put on this Earth as a type of earth angel that inspires us and reminds us miracles still happen and God is still watching over us all.
Grace Anna was born with a rare form of dwarfism called Conradi Hunermann syndrome. Doctors tried to get her parents to abort her over five different times. Each doctor’s visit Grace’s mother was given the option to abort Grace but she refused to take their “option”. It wasn’t something she wanted to even consider.
I was told early in pregnancy that something was “wrong” with my daughter Grace Anna. Doctors knew it was dwarfism, but they had no idea what type.- Angie Rodgers, Graces mother tells us.
She was born with scales on ¾ of her body. The only area not affected was her face and bottom. It appeared she was blind.
Grace’s hands and feet were shaped oddly. Her feet were turned in and she didn’t move them a whole lot. Her spine was twisted like a strand of DNA. Gracie’s hair was very scarce and course. The doctors kept bringing her parents more and more bad news and they felt as if it would never stop.
Finally after an innumerable amount of test doctors told Gracie’s parents she had Conradi Hunermann syndrome. 1 in 400,000 children a year are born with it and usually females.
Conradi Hunermann syndrome, or better known as Happle syndrome, is a rare genetic disorder characterized by growth deficiency, short limbs, large skin pores, sparse or coarse hair and other abnormalities such as Low nasal bridge, flat face, frequent scoliosis and cataracts to name a few. In rare cases, mental retardation may also be present.
The genetics of Conradi–Hünermann syndrome has confused medical geneticists, pediatricians and dermatologists for some time, but a number of perplexing features of the genetics of the syndrome have now been resolved, including the fact that the disease is caused by mutations in a gene, and these mutations are simple substitutions, deletions or insertions and are therefore not “unstable”. Scientists are still trying to understand exactly where the mutation occurs so that they can correct it.
At Cincinnati Children’s Hospital Grace Anna had one of her four eye surgeries to correct the cataracs. She wore gas permeable contacts for a while, but it was such a battle to put them in and out, we switched her to glasses. Doctors also found that Grace Anna had “shelving” in her throat where cartilage stuck out instead of the smooth surface most people have. She also developed mild sleep apnea.
Gracie has overcome many obstacles including being born blind due to cataracts, severe kyphosis and scoliosis of the spine. She has many other health issues she deals with daily.
In 2012 her parents almost lost her due to some complications during a spinal fusion surgery at Johns Hopkins Hospital when she was 18 months old. A horribly frightening experiences but their faith and loads of prayers brought Gracie through.
Gracie and her parents have to travel a lot to visit different doctors and hospitals. The family lives in Kentucky but has had to travel as far as Maryland for special health care.
Through everything, she is never in a bad mood. She is always singing and happy. Gracie is super smart and loves to entertain and make others happy. She is a blessing each and every day to someone. Grace’s mother said, “God truly gave us a little girl that touches our souls.”
Little Grace and her brother are very close and have a special bond between one another. Isaiah, 13 years older that Grace Anna, took on loads of responsibility and had to give up a lot of things to help care for his sister.
In October of 2013 Gracie’s Mom posted a video of Grace Anna singing the Star-Spangled Banner on YouTube and Facebook. It went viral and people became very interested in seeing this little girl who looked so precious sing with such joy. Support continued to grow and Grace Anna became a big hit singing and inspiring others. People from all over the world sent letters, gifts, and cards to Grace and her parents.
Each day, she more than likely experiences some amount of pain in varying degrees, but you would never know it. She is happy 99% of the time. Grace is old enough now to see that she is different from other kids and yet She continues to sing and entertain while going through physical, occupational, and water therapy every week. I have never seen such a motivated individual, says her mother.
Grace’s family believes with all their heart because of their faith and prayers one day Gracie will be able to live a normal life. Gracie never gives up and defeats the odds. She is a fighter and between her strength and beautiful personality it’s hard not to love her. The R.I.S.E. & Stand Team follows Gracie on her Facebookhttps://www.facebook.com/graceannasings and on her Youtubehttps://www.youtube.com/user/gracie2bug We just can’t get enough of her! She is truly an inspiration to us. Our Team each has issues we struggle with. Rather it be health problems, struggles, or what have you we can watch one of Gracie’s videos and realize we choose rather we are going to be happy or sad. It’s up to us to make the best out of every situation in our lives. That is what Gracie Anna has taught us.
She been featured in People Magazine, The Today Show and other various media outlets. You can help support Gracie by purchasing one of her T-shirts on her official website. http://www.graceannasings.net/store-1.html
Our personal favorite Gracie video:
Thank you Grace Anna and your parents for being such a blessing to so many. For staying positive through things that would normally bring people to their knees. And For showing us we can always find a little sunshine if we look for it on any rainy day.
You have all our prayers and support!
R.I.S.E. & STAND TEAM