Daisy White is a senior at Lowry High School (LHS) this year. She's a young woman who has faced some daunting challenges in her life so far. At least, they would be daunting to most people. Daisy, however, hasn't let anything get in the way of her effusive, cheerful nature.
Daisy has been involved with the music programs at French Ford Middle School, Winnemucca Jr. High School and LHS and both her music teachers took the opportunity to say what an inspiration she has been.
"My wife Joan and I have worked with Daisy for many years now and she has been an inspiration to us; we love her dearly," said music teacher Dave Munk. "In spite of challenges most of us can't comprehend, she manages to spread cheer wherever she goes."
Daisy's sister, Kinsy Rose, has also been in the choir at the middle school and enjoyed singing. But this year, she has had more trouble standing, so she chose not to do choir.
Daisy and her sister Kinsy Rose have both been diagnosed with a rare neuro-degenerative brain disease which has no cure and no treatment. Their condition, known by the acronym PKAN, for Pantothenate Kinase-Associated Neurodegeneration, affects only about 40 children in the US. PKAN is progressive and eventually fatal.
The condition is hereditary — passed on by an auto recessive gene that neither the girls' mother or father had any idea they carried. The condition can only develop if both parents carry this auto recessive gene. It's common for siblings to share the syndrome. The doctors told the girls' mother, Katie Paquette, that the prognosis for her daughters' lives from the onset of symptoms was about 10-11 years.
Daisy started having trouble about 6 years ago when she was 12 and going to French Ford Middle School. Her nine-year-old sister Kinsy Rose started showing symptoms at about the same time. It took most of a year and visits to many doctors before the referral to Stanford Medical Center that brought a definitive diagnosis.
Paquette's face clouds up when remembering those days. "It was a hard time for us, as both my girls started having more and more symptoms."
A "hard time" seems such an understatement. Paquette had a one-year-old baby boy and was working several jobs, including real estate, American Staffing and running transitional housing programs for United Way. She quit those jobs and transitioned to bartending then, because that was a job she could work at night and be home to care for the girls all day.
"It seems like a million years ago," Paquette said, thinking back to those tough days. "It took us a couple of years to process it but everything has gotten so much better since then. Our lives changed that day — but, over time, our lives have evened out beautifully."
Paquette admits that there are people in her life that don't understand a statement like that. "They think we're crazy, or in denial," she said. "Some people think we're eccentric because we're not miserable."
Being with Paquette and her daughters underscores the truth of her words. They're not miserable. Paquette's amazingly positive outlook is mirrored in her girls, who both have stunningly beautiful smiles and long silky hair. Kinsy Rose laughs as she plays with a feisty black kitten. Daisy loves to play with her cell phone — like pretty much every teen-aged girl on the planet.
When Daisy and Kinsy Rose were first diagnosed, Paquette traveled multiple times on the train with them to Oakland Children's Hospital in Oakland, Calif., where the two took part in a PKAN research program. "What we came to find out is that there is really no magic pill, no treatment that seems to help," Paquette said.
The girls are now on very little medication; most of their treatment centers on good food, plenty of rest and lots of love. "We're still in touch with all the specialists and they agree that the girls are getting along very well with the way we're doing things for now."
The disease brings progressive debilitation. Daisy is now in a wheel chair full-time. Kinsy Rose has some challenges walking but, for now, is resisting the wheel chair. Daisy's limbs contort and move contrary to her will. Both girls have trouble speaking clearly.
The condition has presented in Paquette's two daughters differently. "Daisy is affected more physically — her mental capacity is still very much there," Paquette explained."It has affected my younger daughter's mental capacity more," Paquette continued. "She has slight dementia but it isn't presenting in her as physically."
Something Katie Paquette shares with her girls is a love for music. Paquette is in a rock band, Daisy is in high school band and Kinsy Rose loves to sing. That love of music is what got Dave and Joan Munk involved with Daisy White and Kinsy Rose's lives.
The Munks are saints and angels, Paquette says. Dave Munk started out as Daisy's school music teacher and Mrs. Munk has been volunteering her time every morning that Daisy can go to school. She goes to high school band with Daisy and plays in tandem with her — she's learned to play the same instrument and plays Daisy's parts when she has to take breaks.
The Munk's son, Peter, will go to the band concerts with Daisy so she can perform with the band. "He will help hold Daisy's legs down when she's having a hard time during the concert," Paquette explained.
Dave Munk said some people have said they don't think it's appropriate for Daisy to perform with the band, with the disabilities and challenges she has. "I just look at her and ask them, 'How could we not let her play when she loves it so much?'" He said.
Daisy's high school music teacher agrees. "Daisy loves music and playing in the band," said LHS music program director Paul Criddle. "She is always so happy to see her fellow band members and enjoys the camaraderie that being in the band provides. Her smiling face and happy attitude are an inspiration to us all."
That Kinsy Rose has the same happy attitude is evident to anyone who looks at her but she is quieter.
"She is a little more shy than Daisy", commented her mother. To which Dave Munk said, laughing, "Everyone is more shy than Daisy!"
Paquette said Daisy's first word was "Hi!" and she's been saying it to everyone she meets since she was eight months old. "It's interesting to see who says 'Hi' back," said Paquette. Some people, surprised and perhaps not knowing how to respond, just look away and don't answer. They don't know what they're missing.
"We live each day in gratitude for all we still have," said Paquette.
Paquette didn't always know how to do that. "I had a hard time coming to Daisy's concerts. When I would hear people say things about her I would feel like I had to defend her."
The terrible, wonderful challenges her girls have presented have given Paquette a reservoir of strength that shines from her eyes. She says she is so thankful. "I was extremely unhappy for no reason for most of my life."
"I know it is a strange thing to say but we are happy and we feel so much love. Many people know us and our story and they have been so great."
