Scleroderma

Haley Pilkington is a remarkable singer for reasons far beyond her 14 years and the dynamic voice that so effortlessly uplifts anyone who hears her sing. Haley is a student of Deborah “Zuke” Smith, a Brett Manning Associate whose students populate northern New Jersey and the New York metropolitan area.

To say that Haley’s story is inspiring would be an understatement. In a note to Zuke/Deb, Haley’s mother, Caroline, wrote the following words about Haley’s health issues.

She has an autoimmune disease called Scleroderma since the age of two which caused the discoloration and tightening of the skin on her left arm and hand. The disease went inactive at age seven and then last year went into an active phase again. She takes immunosuppressive drugs in hopes to stop the disease from progressing any further. Scleroderma has also caused tissue damage in her lungs and vessels that go from the heart to the lungs. Since the blood can’t flow easily from the heart to the lungs, Pulmonary Hypertension has become the result along with an enlarged heart. With this past year of treatment, her pressures have been lowered and her symptoms like dizziness have faded, and she is feeling much better these days.

At first, she didn’t want many people to know that she had these health problems. But, I think she is now understanding the benefits of awareness more…we’ve been discussing fundraising opportunities and other things. Before Christmas, there was a benefit for autoimmune diseases, and kids from the Hackensack Childrens Hospital could enter a “talent show” type of thing… no winners…just showing off their stuff. Anyway I encouraged her to do it but she kind of balked at it so I let it go. I just thought it would be awesome for the people who treat her to see this side of her and also to show other kids that their disease doesn’t define them.

Zuke believes the Haley around nine years old when she first started teaching her piano. She found Haley to be somewhat shy and quiet but eager to learn.

“Her family lived in many places in the world and they had recently moved back to the states from United Arabs Republic,” Zuke said. “About a year or two later, the family moved to Paris, France. When she came home, she came back for lessons but wanted to sing instead of piano lessons. She had been in a choir in school in Paris and her teacher taught her the song “Moon River” which wasn’t a normal song for an 11 year old to sing. We got down to business with her voice because every week she grew more animated and eager to learn. When she came in with a Joan Jett suggestion, I knew I had a young rocker on my hands. Around this time she started having breathing problems and had to go to Boston to see specialists. She hated missing her lessons and even if she was drugged up and exhausted, she showed up. Her tenacity cannot be compared with anyone else.”

Singing Success Online posed six questions to Haley and her mother, Caroline. Their wonderful words best convey the joy and triumph of finding the unique voice and engaging it to its fullest potential.

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