Carly Zukowsky

Carly Zukowsky is a little miracle. At birth, Carly had trouble breathing, and at just one day old was intubated and put on a ventilator to help her little body get the oxygen it needed to grow and thrive. Three weeks later, Carly was diagnosed with a rare muscle condition that causes profound muscle weakness, called myotubular myopathy. Most critically, this disease affects the muscles that control breathing and swallowing. It is a constant threat to Carly's life - even a simple cold could prove fatal. Sadly, many children with this condition do not survive their first year of life.

Carly's parents were told she probably would never walk, talk, or live a normal life in any way. Doctor's expectations were that Carly would not live past her first birthday. Currently, there is no cure for myotubular myopathy, and treatment often focuses on maximizing the patient’s abilities and minimizing any complications. Rehabilitation with physical, occupational and speech therapy has played a huge role in Carly’s success.

In Carly’s eight years of life, she has spent over 500 days in hospitals fighting the flu, pneumonia, and severe respiratory infections. She has been a patient at Children’s Specialized Hospital several times, since she was about three. Most recently, Carly was treated as an inpatient at PSE&G Children's Specialized in New Brunswick, where she received intensive rehabilitation.

“Carly’s life is beyond just surviving," remarks her mom, Christina Cerza. "She learned how to walk because of the tireless efforts and incredible compassion of the staff at Children's Specialized. We were told to not expect too much from our daughter and to just enjoy her for however long she would be with us. Children’s Specialized never counted her out!  She mattered to everyone. She knew that—she felt it—and just that fact alone motivates her to work toward being the best she can be.” 

Carly's parents and their support system have rallied and done everything they can to make her comfortable. No one could have predicted what a fighter Carly is, and she has taken on every milestone with a passion. She never gives up. You can see on her beautiful, little face that she really wants to grow, learn, laugh and play like all the other children. Every movement, every breath has been celebrated.

Most kids with Carly’s diagnosis have a tracheotomy with ventilation support to help with breathing, but Christina credits the therapy team at Children's Specialized for helping Carly live such a healthy and productive life. "Carly has not had to be ‘trached’ because of the joint efforts of her therapy team at Children’s Specialized and her pulmonary doctors."

Today, Carly is a thriving eight-year-old who has far surpassed doctors’ expectations. She works hard everyday. Next on her list is learning how to do her own hair and make up.  We know Carly will far surpass anyone else’s expectations because she never gives up.

You can help Carly and children with special needs from across New Jersey. Please click here to make a donation to help the 500 children who will treated at PSE&G Children's Specialized Hospital this year.