Imagine being a youth and waking up to short term memory loss, fevers, massive migraines, seizures and loss of hearing.
Imagine a world of highly educated doctors and specialists puzzled and perplexed by these symptoms, mis-diagnosing the disorder day-after-day, week-after-week and year-after-year.
Imagine this youth, a young lady at 22, dealing with these mysterious, chronic episodes and conditions all through her grade school, high school and college days — struggling to lead a normal life and experience all life’s wonders, wondering what life wants from her.
Imagine one of the earth’s tiniest life forms being responsible for all this youth’s misery.
And imagine how devastatingly frustrated, confused, sorrowful and fed up you’d be, wishing and praying the suffering and torment would just fade away.
Now imagine this young lady — still in the midst of pain, suffering and confusion — beaming in effervescence and high spirits.
Meet Daisy Kent.
Early Days
Daisy is the daughter of Brandon and Julie Kent of Becker. She has two older siblings (Milan and Josephine) and two younger ones (Adeline and Harrison). Just this spring she graduated from San Diego State University with a degree in communications and journalism.
As a pre-teen growing up in a bucolic setting of rural Becker, Daisy was like any ambitious and curious youth, basking in the idyllic, woodsy backyards of her family home in search of adventure and excitement. Unfortunately, the woods can be fraught with risk to one’s health and well-being.
Daisy’s father, Brandon, remembers at least two instances where his daughter had found a wood tick on her body, with one burying its head deep into Daisy’s neck.
“We pulled the tick off but noticed we didn’t get it all, so we took her to the doctor,” said Brandon. “From there, we never gave it another thought.”
By the sixth grade, Daisy began having seizures and one time could not move for over an hour. She saw a doctor and at first she was diagnosed with epilepsy, an acquired brain injury, similar to head trauma leading to a stroke. Daisy began having severe migraines and experienced dizziness, so she went to see a specialist in St. Cloud.
“I remember that by my sophomore year in high school, I got so dizzy in class I had to lay down right there,” she said. “And by my senior year, I lost my hearing in my left ear.”
Devastating for a girl who is an eager musician, songwriter and singer, hoping to make people’s lives a little happier with the muse of song.
Daisy would end up seeing numerous ENTs, neurologists and was even admitted to Children’s Hospital to see their specialist. Epilepsy was soon discounted and Daisy was eventually told she had Ménière’s Disease — an inner ear disorder that causes episodes of vertigo (spinning and dizziness). Her doctor was very optimistic and had her change her diet, reducing the intake of sodium, eating no red meat and taking oral steroids. She and her family noticed a change, but mostly it was due to a healthier lifestyle than the results of treatment.
On to College
When Daisy left home after graduating from high school, she was excited to get her life on track and explore life’s possibilities in Southern California. It wasn’t too long after her move that she started experiencing ringing in her left ear. The she woke up one day at 2 a.m. with a sever headache and despite her symptoms, decided to attend class.
“In class I experienced shocking pain down my spine so I left class and headed to the campus doctor’s office,” she said. “After talking with the nurse, I was told to immediately go to the hospital for tests.”
Daisy followed the nurse’s orders and after the hospital took blood and ran some tests, the doctor told her it was probably a migraine. She returned to her dorm to lie down but later on she realized she couldn’t move so her roommate helped her get a ride to a different hospital where she got devastating news.
“The doctor came in with a mask and gloves on and told everyone in the room to leave immediately,” Daisy said. “He eventually told me I had meningitis, which is highly contagious.”
The doctor’s did a spinal tap, a procedure where a needle is inserted between two lumbar bones (vertebrae) to remove a sample of cerebrospinal fluid.
“They had male nurses holding me down on my legs and my arms because of how painful it is,” said Daisy. “After the tap, they thought it was bacterial meningitis (can be life-threatening), but eventually they said it was fungal (can be treated.”
Eventually, everyone who had come in contact with Daisy were required to have spinal taps as well because of its contagiousness.
Daisy returned home to Becker following the meningitis scare but developed an infection in her stomach which knocked her off her feet again. She went from 115 pounds down to 103 in a week-and-a-half.
Now What?
Daisy would continue to see doctors and specialists and by January of 2020 the hearing in her right ear was diminishing. While seeing a chiropractor for her spine last summer, the osteopath suggested Daisy see a “medicine man” in Wisconsin who specialized in alternative medicine and spiritual healing. Feeling it couldn’t hurt, Daisy made that appointment and it changed her world immediately.
After meeting with the medicine man, the doctor told Daisy that he was sure she had Lyme Disease and put her on herbs and had her cut out sugar and gluten foods. Daisy used this information to see her family doctor and she told him what the medicine man had said. Her doctor went ahead and ran some tests, but the results for Lyme Disease came back negative.
“However, they didn’t run the full tests,” Daisy said.
So, Daisy’s Chiropractor, Katherine Miller, took Daisy to a Dr. Novak, a specialist she knew in the field of Lyme and asked him to run extensive tests for Lyme Disease. Two weeks later, Daisy was informed that that she in fact had Lyme Disease. Finally, she knew what was causing all her distress.
“All this was so emotionally and physically exhausting for Daisy as well as the rest of us in the family,” Brandon said. “They began treating her for Lyme but it still wasn’t getting the results we had hoped.”
Where to Turn?
Daisy eventually heard from a friend about treatment for Lyme Disease using Hyperthermia — a high-heat treatment that kills the strains of Lyme Disease. Whole-body hyperthermia treatment puts a patient in a special thermal chamber. Then, using infrared-A-irradiation, the core temperature of the body is carefully increased. The goal is to bring the patient’s body temperature to at least 106° F (41.1° C), the point at which many strains of Borrelia (Lyme disease) are killed.
“I’ve heard of at least three other Lyme patients around my age who have come back from Germany and are fine now,” Daisy said. “So I contacted the doctors there and they got me an appointment right away.”
GoFundMe
Daisy’s sister, Adeline could see the misery her sister was in and the toll, physically, emotionally and financially the disease was manifesting. So she took action and created a GoFundMe page to help defray the costs of the Germany trip, but all the previous doctor and hospital visits. The GoFundMe page Adeline created had a financial goal of $60,000 and by Wednesday of this week, 326 people had donated totaling $31,522.
“I so appreciate everyone for their support,” Daisy said. “This is having a life-changing impact on my life.”
Off to Germany
Daisy and her father left the United States Wednesday, Aug. 4 and she will be treated for 29 days at the most. Her mother, Julie, will make the trip out to Germany in a few weeks. Statistics show 70% of the people treated there come out of it feeling 100% better immediately while another 20% said it took them a few months to get back to normal. Just 10% reported the process didn’t work for them.
“We’re optimistic and hopeful,” said Brandon.
“I’m looking forward to going there but I’m also scared and nervous,” Daisy said. “It feels just like the time I was dropped off at college and you realize nothings going to be the same after this.”
Daisy said following treatment, she hopes to get her hearing back or at least stop the progression towards silence. She says of all the maladies she’s experienced, the toughest has been the loss of hearing and the ringing in her ear.
While at San Diego State, Daisy birthed a non-profit called Hear Your Heart, an organization devoted to enriching the lives of children with hearing conditions and also children with autoimmune disorders.
“We want to show these kids that we hear them,” Daisy wrote on her website. “We support them. Our hearts are with them. Hear Your Heart believes every child should live their life to their fullest. This is an organization that encompasses what it means to truly Hear Your Heart.”
Brandon credits his son, Milan, with helping to steer Daisy towards having an optimistic outlook and giving her a focus on a purpose in her life.
“Milan, of course, knew Daisy was struggling, but he knew it was more than the disease,” said Brandon. “It was an objective and a goal where she could use her experience to help others. He put a fire under her.”
Through her non-profit, Daisy hopes to one day speak at church functions, school events and visit kids in hospitals to tell her inspiring story. A story on how life’s circumstances can change in a heartbeat and if you don’t have the right outlook or disposition — it could derail you and shatter one’s spirit.
But not Daisy. She’s faced it all and despite the difficulties, exudes buoyancy and a zest for life. Though she’s battle-worn and lost some hearing, she still hears, sees and lives better than most of us.
