New parents want something for their child. Fun toys. A new stroller, maybe. A safe environment. Opportunities. All Sandi Quinlan, a sixth-grade math teacher at Wayland-Cohocton Central School District, wanted for her daughter, Taylor Kirin, was a non-mutated version of the type VII collagen gene.
When Touch Becomes Trauma
Taylor was born with the most severe type of dystrophic epidermolysis bullosa (EB), a rare skin condition in which the mutation of the type VII gene causes the skin to lack the anchoring fibrils that bind the skin’s layers together. Any trauma to the skin causes it to tear apart, blister or shear off, leading to severe pain. As the blisters heal, they result in severe scarring and eventual disfigurement.
Scarring and blistering in the mouth and esophagus can make it difficult to eat many foods, which can lead to poor nutrition. There is no known cure for EB, only management.
“It was not an easy thing to hear about your newborn. We were in shock,” recalls Quinlan.
What Quinlan soon discovered was that she was graced with an exceptional child. Taylor proved to possess an uncanny ability to see beauty in the world, inspire others, and love immensely. She was also a fierce fighter. Children born with the most severe form of EB are expected to die before their second birthday and never walk.
Taylor lived until age 19, passing away in March 2017.
It’s About Living
When Taylor was an infant, her mother was afraid to hold her, knowing she could damage her skin by simply changing her diaper. After the initial shock of the diagnosis wore off, Quinlan truly believed there would be a cure. Taylor proved to have incredible strength and her bravery helped her mother.
Taylor had to wear bandages for hours each day and the dressing changes caused severe pain.
“To love someone with your whole heart and to knowingly cause that pain to help her see another day is a brutal situation to be in as a parent,” says Quinlan.
Determined to live, little Taylor continued to grow — and thrive. She enjoyed painting, gardening, cooking and horseback riding, and was bright and compassionate. If she received money for her birthday, she’d spend it on others. Through her love for painting she observed and appreciated the splendor of life.
“Taylor powered through her pain with a smile on her face despite being covered in blisters and bandages,” says Quinlan. “She enjoyed the sunrise. The moon at night. She’d watch a butterfly. She was the best person I knew. She had wisdom.”
Perhaps the self-awareness of her suffering gave Taylor a sagacity beyond her years. She knew she survived beyond expectations, but living grew more painful and her condition worsened. She lost her hands and more than half her teeth. Eventually, EB took her life.
To honor Taylor and celebrate her life, Quinlan created Taylor’s Touch to perpetuate her daughter’s desire to bring joy to others. In 2018 and 2019, Taylor’s Touch funded a school supply drive, and donated turkeys at Thanksgiving and presents at Christmas.
Quinlan remembers when Taylor was born. She took an unpaid leave and struggled through the holiday season. Another family saw their story and showed up with gifts for Taylor and her two sisters, Sarah and Paige. That compassion made an impact and Quinlan sees Taylor’s Touch as a way to extend that love and support.
Taylor was a gift. For Quinlan, having a critically ill child made every day a celebration. Time was never taken for granted.
“Having Taylor forever changed me,” says Quinlan. “It made me a better person. She had that effect on anyone who met her. She gave us true insight on what is important.”
Today, Taylor’s Touch continues to give and organizes fundraising to donate to research. With awareness of EB growing rapidly, Quinlan believes researchers are only a few years away from a breakthrough. If Taylor’s Touch can help prevent another child from suffering from the disease, that would be the best gift of all.
You can contribute by growing your awareness. Actors, musicians and others are bringing attention to EB. Learn more at www.ebmrf.org.