Web exclusive, February 27, 2019
Blue Hill woman pens The Power of Love
On raising a son with a rare disease
Suzanne Fenders, photographed in her Blue Hill home, published The Power of Love to share her family’s story, and give others hope.
by Anne Berleant
Nearly 50 years ago in Blue Hill, Suzanne Fenders gave birth to her son Nathan, who was quickly diagnosed with VACTERL association, a rare disease that includes vertebral defects, anal atresia, cardiac defects, renal anomalies and limb abnormalities, with those diagnosed having three or more of their body’s systems affected.
What followed for the Fenders was years of surgeries for Nathan, while his mother learned how to care for him, and her eventual three other children, while also supporting her husband in his military career, with all of its geographic moves.
Three years ago, with Nathan 43 years old, in good health, and married, with children of his own, Fenders sat down to write his—and the family’s —story. Titled The Power of Love, the book is available through Amazon, both in print and as an e-book, after Fenders self-published the 189 page edition on February 16—days before National Rare Disease Day, February 28.
“I always wanted to put down on paper what Nathan went through, what we all went through,” Fenders said. “And to help people realize you do get through these things. You just have to have faith.”
She had her son’s full support in writing down and publishing their story, Fenders said, “because he didn’t really know the story.” With nine surgeries before he was 2 years old, Nathan grew up with scars from operations he didn’t remember going through.
“I think he was one of the lucky ones,” Fenders said of Nathan, now an IT employee at a medical insurance company. “I’ve read stories of people [with VACTERL] who can’t leave their houses.”
The Power of Love tells not only Nathan and his mother’s story but also that of a military family with strong connections to Blue Hill.
Fenders said she just took each day as it came, with “angels” appearing among neighbors and friends who were able to support her and Nathan in their daily struggles to adapt, including a nurse living next door.
“Somehow we were supplied with what we needed when we needed it,” Fenders said.