Carly Joy Goes to the Capital

 

 

Today’s blog post is a little different – it’s actually two posts in one, both about a pretty amazing young girl named Carly Joy Bozym, who happens to have Turner syndrome.  The first story was sent to me by her mother, Dana Bozym, just a few days ago after she and Carly Joy were invited to the state capital in Pennsylvania.  The second was also  submitted by her mom, but written by Carly Joy’s acting coach, Mandy Bruno.

 

 

Carly Joy Goes to the Capital  by Dana Bozym

 

What an emotional and amazing day!  Since the day Carly Joy was born, she has been my hero and inspiration. I truly am the mom and person I am because of my journey through life with her.

 

She has encountered more obstacles in her short life than most adults do in their entire lifetime. At times, I question how it's even fair or possible. Today was a special day. Carly Joy was introduced on the State Senate Capitol Floor in Harrisburg, Pennsylvania as a miracle, survivor and inspiration, followed by a standing ovation.

 

Then Senator John Blake talked about Turner syndrome. I watched in admiration and thought, “wow, that's my baby they’re talking about!” As amazing as that was, the defining moment was to follow. Senator Blake introduced me to a gentleman on the Senate floor who was familiar with Turner syndrome. Unfortunately, he was aware of it, because he and his wife lost their baby girl in utero to Turner syndrome.

 

At that moment, he took the time to thank me for my efforts in spreading Turner syndrome awareness, especially positive awareness, to state legislators. He went on to share how scared he and his wife were when they received their diagnosis; that their doctors and medical professionals had little to no knowledge of TS, and that when they searched the internet, they became overwhelmed.

 

He then went to compliment Carly Joy and spent some time talking with her.  I hugged her as we walked away, and thanked God for this crazy journey. Yes, we have cried many, many tears, and we may not always understand why, but in the end, she is my MIRACLE.  She beat the 2% odds, and no matter what, as long as we have each other, and our love and faith, we CAN and WILL conquer anything.

 

I am committed and will continue to advocate and spread awareness with the help of our legislators - especially Senator John Blake.  This is the 6th year that I, along with the help of Senator Blake and other congressional leaders, have had February proclaimed Turner Syndrome Awareness Month in Pennsylvania! 

 

Pictured are:  Carly Joy, mother Dana Lynne Bozym, grandfather Joseph and Senator John Blake.

 

 

Every Once in a While, You Come across a Child Who Changes Everything

by Mandy Bruno (acting coach)

 

Every once in a while, you come across a child who changes everything. For most of us, it’s our own children. While having my own has surely changed my life in beautiful and unexpected ways, it was someone else’s child who took me by surprise.

 

I first met Carly Joy at CaPAA (The Creative and Performing Arts Academy), a Children’s Theater in Scranton, PA.  I’ll never forget the moment this little bundle of joy walked into the rehearsal room, while hula hooping. She was playful, smart, funny and determined. Carly Joy loves theater, singing and dancing. She loves swimming, her Pittsburgh Penguins ice hockey team, and Kidz Bop.

 

Her smile and spirit lit up the room. Her energy was infectious. She was loud, silly, and full of imagination. She was kind and inquisitive. And she followed me around constantly, asking if she could help. She was 10. And as I would soon find out...she had Turner syndrome. As I got to know her, I learned about her infliction.

 

Turner syndrome is a genetic disorder that affects 1 in 2,000 women. Only 2% of baby girls with Turner syndrome even make it to birth. Carly Joy was not only one of the most amazing kids I had ever met, she was also a miracle. A living, breathing, beautiful little miracle.

 

Life is anything but easy for Carly Joy. Her days are filled with a laundry list of aliments. Symptoms include heart and thyroid issues, short stature, poor bone density, infertility, non-verbal learning disorder, hearing impairment, social anxiety, and depression.

 

In her first 10 years of life, she has had 14 surgeries. They have ranged from six sets of ear tubes, tonsils, adenoids, emergency surgery from a blood clot, a cyst removed from the back of her head, multiple gastro/intestinal scopes and a constant toe infection that led to having her toenails permanently removed on both of her big toes; and most recently, double eye surgery.

 

She has multiple diagnoses from aortic bicuspid valve, hypothyroidism, dumping syndrome, non-verbal learning disability, anxiety disorder, scoliosis, spondlythesis - just to name a few.

 

Despite all the obstacles she has faced in the first 10 years of her life, Carly Joy is truly a happy and outgoing little girl who enjoys EVERY single day of her life. She is very stubborn and tenacious. She is a fighter. She is determined to overcome statistics and prove people wrong. Although she is only 10, she has endured so much trauma.  Nonetheless, she dreams of becoming a children’s heart doctor, or ‘Carly-ologist,’ as she proudly says. “I don’t want babies to be afraid of doctors or the pain like I am.”