WHEATFIELD – At just 15, Virginia “Ginny” Fagard has had to battle for most of her life.
Diagnosed with leukemia at age 4, she battled her way to remission after years of radiation and chemotherapy. Last summer, she flourished – walking at a normal pace, going to school and even learning to swim.
In January, however, she was diagnosed with inoperable brain cancer – back in treatment, back in a wheelchair, learning to walk and talk all over again.
But at heart she is still like any other 15-year-old girl and one thing still make her smile – One Direction.
“My favorite is Harry Styles,” said Ginny, lighting up as she thinks about the dreamy member of the boy band.
Special Spaces Buffalo can’t make Harry Styles stop in for a visit, but the volunteer group, which creates dream bedrooms for kids suffering from life-threatening illnesses, spent the day Saturday decorating her room in her favorite color, pink, and with the band of her dreams.
Lynn Wall, director of Special Spaces, brought the chapter to Western New York four years ago after she saw the founder, Jennifer Swain, and her 10 children in action on television doing a bedroom makeover for a little girl with cancer.
Wall, who works full-time for M&T Bank, said she and her core of volunteers, including co-director Beverly Olsen, have done 33 dream bedrooms for children in four years.
Ginny’s room was a mix of practical and pink everywhere, with a One Direction mural featuring all the boys and pillowcases with Harry Styles’ face, which she can snuggle into. A hospital bed in her room got a makeover with custom-sewn cozies made from One Direction sheets.
For Wall and crew, One Direction was the mission of Saturday’s makeover.
Ginny’s mom, Michele Lloyd, and stepdad, Tom Lloyd, smiled as they reminisced about earlier this month when Ginny was given an opportunity to see One Direction in concert in Buffalo.
But reminiscing with The Buffalo News about the days before the concert, the smiles faded.
Ginny, in a pink head scarf, is bundled up under a blanket. She struggles, unable to speak clearly and walk. An entire side of her body has been affected by the brain tumor. She also struggles with the emotional impact of being diagnosed with a brain tumor.
In 2005 Ginny, at age 4, was diagnosed with a very aggressive form of blood cancer called T-cell leukemia. Doctors at Women & Children’s Hospital treated it aggressively with 101 weeks of chemotherapy, radiation and several surgeries.
She beat it, but she faced side-effects, including delayed learning and slowed growth.
“It’s poison that you are giving to your child to the point of almost killing them, they are so sick,” said Michele. “And now she is going through it all again.”
On Jan. 7, at Ginny’s annual checkup, the doctor observed a slight weakness in her left hand. An MRI found spots, the ultimate diagnosis – an inoperable brain tumor.
“I felt the same way I felt the first time I heard she had cancer. My world just crumbled,” said Michele.
For Ginny, there are no words, just inconsolable tears. Unlike the diagnosis when she was 4, she clearly realizes what is ahead for her.
“She’s a pretty tough kid. She’s a fighter and won’t quit,” said Tom, hugging the tearful Ginny.
She received radiation, but the next phase, chemotherapy, is on hold due to a biopsy wound on Ginny’s head that refused to heal. She receives hyperbaric chamber treatments five days a week, lying in a glass tube that looks like a tanning bed for two hours a day. The hope is that the wound will heal before the tumor spreads.
Michele was fired from her job after she used up all her personal time to care for Ginny. Neighbors set up a GoFundMe account – “Ginny’s Generosity” – to help with the mounting bills for the large family including six children. Ginny has a brother, Carey, 19, who lives at home, as well as two older sisters, Tricia, 23, and Alyssa, 22. Tom has two teenage children he supports.
The day away for the room makeover on Saturday was tiring for Ginny, but her eyes shined bright and her wide smile spoke volumes as she looked around her new room.
Her mother and grandmother, Patricia Barone, were in tears at the transformation, in awe over what they deemed a miracle done by angels.
On Monday, said Michele, Ginny will have her next MRI and the family will pray for the next miracle, a stable or clear scan. Ginny’s story and details of the room makeover are on Facebook, under “Ginny’s Journey” and “Special Spaces.