SURF CITY, N.C. — Some stories are better written by someone closer to an issue than anyone else.
Lisa and Doug Pate can speak to that as parents.
“There's nothing like watching your child suffer,” Lisa Pate said.
What You Should Know
Lisa Pate wrote her first book about her daughter, Ginger Pate
The mother hopes parents and children reading "I Have Autism But I Want to Play Too" can learn how to interact with people who have disabilties
Ginger Pate has a rare genetic disorder called KCNMA1 and other medical conditions
She’s seen it time and again during her daughter Ginger’s childhood on beaches much like the one outside their Surf City home. At an early age, she said her daughter exhibited signs of multiple health conditions as vast and endless as the Atlantic Ocean.
“It can be difficult at times, but we know that we are doing it to protect her," Pate said.
Pate said she watched other children and parents struggle with how to handle her daughter’s autism spectrum disorder in a neurotypical world.
“Oh, it’s hard,” she said.
She couldn't keep those kinds of life experiences to herself, so she wrote a book: "I Have Autism But I Want to Play Too."
Pate used illustrations of herself talking to moms about Ginger. The book cover is an image drawn in the shape of Ginger as a young child.
In the book is a depiction of a moment Pate witnessed. She said years ago her daughter built a sandcastle so wonderful, other children asked how they could build one too ... except Ginger couldn’t explain because she can’t talk.
“The concept of the book is for kids to approach kids that have disabilities and interact with them,” she said.
Her husband agreed.
“Even on her worst day, we are willing to deal with that as long as we got her,” Doug Pate said.
Ginger’s lifelong bout with ASD is just the tip of the iceberg. She has a rare genetic disorder called KCNMA1.
Research published in the National Library of Medicine described KCNMA1-linked channelopathy as “an emerging neurological disorder characterized by heterogeneous and overlapping combinations of movement disorder, seizure, developmental delay, and intellectual disability.”
It’s a condition inhibiting communication between cells in her brain. Over time, the Pates have developed a language without using words.
During the middle of the day last summer, the mother and daughter relaxed together on the couch of their beachside home.
“Turn it on Elton?” the mother asked. A tap on the leg is Ginger’s way of saying yes.
“Ginger loves to watch 'Rocketman.' She is a big Elton John fan," Lisa Pate said. "Now she’s happy because Elton's on (the TV).”
"Rocketman" is a movie based partly on the life of Elton John.
Ginger outwardly expressed her happiness with a smile. This is one of her most visible forms of communication. Ginger, an adult, can’t talk, but her mother can see the nonverbal cues on her daughter’s face.
Her mom said Ginger showed her love for the British rock superstar with a subtle shaking of her hand.
”She likes to watch him three or four times a day,” Lisa Pate said.
Neurologists at Duke Hospital told their family fewer than 50 people in the world, including her daughter, have KCNMA1, Pate said.
In addition to KCNMA1, the 26-year-old suffers from dystonia. Dystonia is a muscular disorder that creates involuntary muscle spasms, according to the Mayo Clinic.
Over time, Ginger's throat muscles became so weak she could no longer speak. Sometimes she needs help eating and can experience difficulty swallowing.
Something as simple as sucking through a straw can help with drinking.
“It really can’t be put into words how excited we get when she makes progress," Lisa Pate said. "It’s like we are achieving something, too — the whole family.”
Ginger also experiences "drop attacks" brought on by atonia. Atonia causes a total relaxation of the muscles in the body. A drop attack can resemble an epileptic seizure.
Based off conversations with neurologists, Lisa Pate said atonia is likely the stimuli behind the drop attacks. According to MedLink Neurology, “Drop attacks are sudden falls without loss of consciousness that are not precipitated by a specific stimulus, occur with abrupt onset and without warning and are followed by a rapid return to baseline.”
Pate shared cell phone video of a drop attack with Spectrum News 1. At one point, Ginger had more than 100 episodes per day.
They tried different medications and eventually landed on Adderall XR, typically prescribed to people with attention deficit hyperactivity disorder. Pate said the drop attacks are down to about a dozen a day, lasting 15-20 seconds at a time.
Some prescriptions don’t come in the form of a pill. The sea breezes and coastal Carolina air bring out the best in the 26-year-old.
“She likes to come out here and relax,” Pate said as Ginger rested on their back porch swing. Seeing Ginger at peace is why the couple moved here, Pate said.
The Pates hope publishing this book will pave the path to a cure. Until then, they will continue simple pleasures like taking their boat, aptly named Ginger, out on the water.
The Pates will review a physical copy of the book for publishing on Monday. If everything checks out, Lisa Pate will give final approval for print distribution. The family confirmed the book should be available for purchase online and in stores by Jan. 1.
They hope sharing Ginger's story will generate funding to research her rare genetic disorder, and they have set up a GoFundMe page for donations.
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