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news News Tuesday, March 27, 2018 Tuesday, March 27, 2018 12:11 PM - Tuesday, March 27, 2018 12:11 PM

Changing the world one song at a time

The amazing grace of Grace Anna

Changing the world one song at a time

Amazing grace! How sweet the sound,
  That saved a wretch; like me!
I once was lost, but now am found,
  Was blind, but now I see

’Twas grace that taught my heart to fear,
  And grace my fears relieved;
How precious did that grace appear
  The hour I first believed!

The Lord hath promised good to me,
  His word my hope secures;
He will my shield and portion be
  As long as life endures.

When we’ve been there ten thousand years,
  Bright shining as the sun,
We’ve no less days to sing God’s praise
  Than when we first begun.

Amazing Grace is a Christian hymn published in 1779, with words written by English poet and Anglican clergyman John Newtown. Amazing Grace is one of the most recognizable songs in the English-speaking world. How many people can say that over 200 years ago, John Newton wrote the song with them specifically in mind? Even more than that, how many can say that they have been singing Amazing Grace since 16 months of age? Lexington Shriners Medical Center is privileged to know a little girl that can answer “ME!” to both of those questions.

A beautiful voice comes from a 7-year-old girl as it rings through the halls of Shriners Hospitals for Children Medical Center — Lexington. The voice is of laughter, jokes and singing. As she travels throughout the medical center, people stop to notice her beauty, some recognize her from hearing her sing Amazing Grace or the National Anthem. Others recognize her from her large social media presence or the recent book released in 2017 documenting her inspirational journey.

While pregnant, Angela received the news that something wasn’t quite right with her baby girl. An ultrasound showed abnormalities with the shape of the baby's spine, feet and head. Doctors tried to convince Angela and Jeff to abort the pregnancy more than five times. It was never an option for them and they stayed strong in their faith committed to loving their little girl no matter the obstacles they may face.

Once they found an OB/GYN they could trust, it was explained that upon delivery their child would face several unknown medical issues. “Little did we know that very soon, all that heartache would be healed. God was leading us to a special child who not only would change our lives, but the lives of millions of people around the world,” said Angela.

On July 9, 2010, Grace Anna was born. After a rough delivery and recovery for Angela it was several hours later that she would meet her daughter for the first time. The pediatrician came into her room to prepare her for what she was about to experience. “I’ve never seen a child born with some of the things your daughter has,” explained the doctor. “She has scales on most of her body and has some physical abnormalities”

Angela wasn’t afraid. It didn’t matter to her what her precious child might look like. She yearned to meet and hold her child for the first time. As soon as Angela held her newborn in her arms, she immediately knew that her daughter was unique. She wasn’t bothered for a minute by the fact that her daughter might never be a ‘usual’ little girl, but was overcome with the presence of holding a warrior in her arms.

Shortly after Grace Anna was born, Angela and Jeff received news from the geneticist that lab results confirmed a diagnosis of chondrodysplasis punctata. Conradi-Hünermann syndrome is classified as the dominant form of chondrodysplasia punctata, a group of disorders characterized by the formation of small, hardened spots of calcium on the "growing portion" or heads of the long bones or inside other areas of cartilage in the body. Conradi-Hünermann syndrome is commonly associated with disproportionate and asymmetric shortening of long bones, particularly those of the upper arms and the thigh bones, curvature of the spine and mild to moderate growth deficiency, resulting in short stature. 

Today Grace Anna receives medical care from 14 different medical specialists who work tirelessly to bring hope for and healing to her medical conditions; such as, being born blind due to cataracts, severe kyphosis and scoliosis of the spine, to name a few. One of the 14 specialists is Vishwas Talwalkar, M.D., pediatric orthopaedic surgeon at Lexington Shriners Medical Center. Dr. Talwalkar has been overseeing the orthopaedic needs of Grace Anna since she was 4 months old. 

In the book Grace Anna Sings authored by Angela, she documents the first time she and Grace Anna met Dr. Talwalkar. A section from the book reads, “When Dr. Talwalkar entered the room, he greeted us with a big smile and handshake. He immediately spoke to Grace Anna in a softer, sweeter tone. It was evident he related to his patients very well. I felt comfortable expressing my concerns and questions with him.”

Dr. Talwalkar is quoted in the book as saying, “Grace Anna is unique. There are few girls like her. This will be a process of seeing how she grows and how her spine forms through the growing process. With Conradi, one side of the body grows faster than the other, so there is no way to know fully how her body will form or if it will be able to adapt without help from braces, surgery, or castings.”

At 1 year of age, Grace Anna had both legs casted from the hips down to her toes by Dr. Talwalkar. Her feet were turning in and her legs were not straight. “We love the staff at Shriners Hospital. Each time she needs to have something done, every person we encounter is always full of joy and loving with Grace Anna,” Angela said. “I also have grown to greatly respect Dr. Talwalkar, and Grace Anna adores him. She thinks he is a very cute doctor and his personality helps them to bond. She has nicknamed him ‘Dr. Cutie.’”

Grace Anna sings to Dr. Talwalkar and others

To this day, Grace Anna continues to receive care from Dr. Talwalkar for a variety of issues; including, club feet, contractions, scoliosis and kyphosis. Throughout her 7 years, Grace Anna has had both legs casted seven different times by Ron, cast tech, to continue straightening her legs. “Ron is my favorite part of going to Shriners Medical Center. He knows how to take care of me and I am not one bit afraid of the noise,” said Grace Anna. “I have had a bunch of casting and it is easy cheesy!”

Grace Anna’s grandfather, Virtreas Godbey was a Shriner until the day he passed away. Their family has grown up witnessing Noble Virtreas’ passion for the children and mission of Shriners Hospitals for Children. And just like Noble Virtreas, Angela and Grace Anna want the world to know about Shriners Hospitals for Children. “So many people come in and out of your life, very few make a huge impact. Dr. Talwalkar’s rock-solid character is hard to find in this world. How he has treated Grace Anna and us is an example of how others should expect their doctors to treat them. It is important for people to know there are great doctors out there,” Angela said.

Grace Anna’s story is not finished. Read more about her first seven years on this magical journey, with special mentions about Dr. Talwalkar, Ron and Lexington Shriners Medical Center in Grace Anna Sings. Angela has also written a children’s book featuring Grace Anna, which is set to release Easter of 2019.

Visit Grace Anna’s website to keep up-to-date on all that is happening in her life and to find information regarding the books and a CD that is set to release in the near future.

From all of us at Lexington Shriners Medical Center, “Keep singing and inspiring the world with your beauty inside and out, Grace Anna! We are honored to have a front row seat to all the mountains you have climbed and will continue to soar above.”

Collage of different photos of Grace Anna from bith to 7 years of age