I first met Carly Joy at CaPAA, 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 loved theater, and singing and dancing. She loved 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 2500 women. Only 2% of baby girls diagnosed, 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 disorders, hearing impairment, social anxiety, and depression.
In her first 10 yrs 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.
Despite all the obstacles that 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 only 10, she has endured so much trauma, but, nonetheless, 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.”
Why am I reaching to you?
I need your help.
As bright and optimistic as Carly Joy is, she is starting to enter her prepubescent years. Reality is setting in, and it’s setting in hard. She is starting to notice, that she’s not like the other kids and the other kids are starting to notice she’s not like them. Sadness is setting in. I talked to her mom the other day, and she found Carly Joy’s hearing aids at the bottom of the trash can. When her mom asked her why, Carly Joy said,“I just want to be like every one else.”
Carly Joy has yet to have the opportunity to meet someone like her. But there is a place where that can happen. She and her devoted mother, Dana, can attend the annual TS conference next summer in Washington, DC. For two days, she deserves to feel 'normal’, like she belongs, to meet others like her. They have activities to help these young girls build self esteem, deal with the medical aspects and even help them deal with what the future will hold, like the reality they will not be able to bare children of their own.
For the special needs parents, they will offer support groups for the medical, educational and psychological struggles, as well as, informational sessions on the latest research.
I’m starting this GO FUND ME page, so that can happen.
With medical bills piling up, Dana is doing the best she can. I’ve never seen anybody work harder. I want to help her make this happen without any added stress.
I want to cover their plane tickets, travel, hotels, food, gas, car rentals, and maybe even a day to enjoy the sights of D.C.
As Dana told me just the other day, “Some families dream of a Florida Vacation to Disney World...all Carly wants is to meet someone like her.”
Carly Joy is an inspiration to my life and everyone around her. And I guarantee, if you ever met her, she’d be an inspiration to you too.
Thank you, from the bottom of my heart, for joining my effort to make CARLY JOY’S SIMPLE WISH come true.
With Love and Gratitude,
- Adrian Wallace
- Kristine Kapps
- Donna Witek
- Mark Lopa
- Kim Jenkins
Organizer and beneficiary
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