Capture3By Angie Rodgers, Special to Everyday Health

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. After her birth it didn’t get much easier for doctors to determine what was going on with my sweet girl.

A Rare Gem

She was born with scales on ¾ of her body. The only area not affected was her face and bottom. It was so severe on her hands that it had tightened her fingers together to where it looked like she had six fingers on one hand. She didn’t have much hair and what was there was very dry and coarse.

When doctors tried to check her eyes, they could not get a reflection from her retinas. They assumed she was blind. In actuality, she had cataracts on both eyes. Her 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. It just seemed like every other hour they were telling us something else they had found out about her.

After a week stay in the NICU a geneticist finally came up with what Grace Anna had, Chondrodyplasia Punctata. Genetic testing would identify a specific gene, CDPXD2, later on for a form of CP called Conradi Hunermann Syndrome. 1 in 400,000 children a year are born with it. There wasn’t a vast amount of information out there about the genetic disorder and doctors in Lexington, KY were not familiar with it at all.

After a couple of unsettling doctors’ appointments we traveled to Cincinnati Children’s Hospital to meet doctors. Within weeks Grace Anna had one of her four eye surgeries to correct the cataracts. 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.GraceAnna1

Some of the main characteristics of Conradi Hunermann are ichthyoids, cataracts, small nose with flattened bridge, skeletal deformities, sparse hair, hearing problems, short stature, skeletal malformations, stippled epiphyses near areas of cartilage (spots of calcium growth), asymmetrically shortening of the bones (arms and legs are different lengths), curving thigh bones, and curving of the spine. Conradi Hünermann syndrome is inherited as an X-linked dominant trait that occurs almost always in girls, on rare occasions boys can have it. Grace Anna has all of these characteristics with other effects that are individualized to her. That is one thing about the disorder it can vary greatly from person to person.
Grace Anna was different, but we would soon learn all those differences can make a big impact on others.

A Big Voice For A Big Story

Like all parents that have children that are considered “different,” our lives totally changed. Grace Anna had spinal fusion at Johns Hopkins Hospital when she was 18 months old. We almost lost her due to complications with the surgery. As a family, it changed us forever. Our priorities changed and so did we, all for the better.

We adapted our lives to staying in during cold and flu season, but our daily routines were thrown out the window. We basically roll with the flow and expect the unexpected. My son, Isaiah, 13 years older that Grace Anna, took on more responsibility and gave up things that most kids his age take for granted. We had setbacks and heartache dealing with watching her struggle, but little did we know that this amazing little girl would show us that nothing could stop her.

In October of 2013 I posted a video of Grace Anna singing the Star-Spangled Banner on You Tube 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 us letters, gifts, and cards encouraging us and sending love to our daughter. It is the most awesome feeling to know so many people are touched by her sweet spirit and are supporting us through prayers and love.GraceAnna2

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. She hasn’t walked yet, but she is well on her way. She continues to sing and entertain while going through physical, occupational, and water therapy every week. I have never seen such a motivated individual.

I used to worry my sweet princess would struggle her entire life, but I’ve realized she is a warrior. Most of the children we have contacted with Conradi Hunermann have the same mindset as she does. They are tough, extremely smart, and never give up. When people think children can’t offer much because they don’t fit into a specific idea of what is acceptable, they can look at Grace Anna and realize that a child is capable of incredible things if they are just given the chance and the support.

Angie Rodgers teaches science at Russell County Middle School and has been a teacher for twelve years. She is the mom to Isaiah Spears and Grace Anna Rodgers and has been married to her husband Jeff for six years. She is a graduate of Eastern Kentucky University with a Master's Degree in Educational Leadership and a Bachelor's Degree in Middle Grades Education. You can follow Grace Anna on Facebook or Youtube.
