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NewsOctober 1, 2017

Kinslee Kinder's journey with Rett syndrome

On July 13, 2016, Jessica Kinder found out her daughter, Kinslee, was diagnosed with Rett syndrome. Rett syndrome is a rare neurological disorder that causes problems in brain function that are responsible for learning, speech, sensory, mood, movement and several others.

Andrew J. Whitaker
Kinslee Kinder, 2, smiles as she waits to be fed by her mother, Jessica, (not pictured) during dinner at their home Wednesday, Oct. 26, 2016, in Cape Girardeau. On July 13, 2016, Jessica found out her daughter was diagnosed with Rett syndrome, not to be confused with Tourette Syndrome, but Rett syndrome is a rare neurological disorder that causes problems in brain function that are responsible for learning, speech, sensory, mood, movement and several others.
Kinslee Kinder, 2, smiles as she waits to be fed by her mother, Jessica, (not pictured) during dinner at their home Wednesday, Oct. 26, 2016, in Cape Girardeau. On July 13, 2016, Jessica found out her daughter was diagnosed with Rett syndrome, not to be confused with Tourette Syndrome, but Rett syndrome is a rare neurological disorder that causes problems in brain function that are responsible for learning, speech, sensory, mood, movement and several others.
While having Christmas dinner at their home, Cody reaches over to feed Kinslee Christmas Day, Sunday, Dec. 25, 2016, in Cape Girardeau. Jessica said family has been a huge help with Kinslee.
While having Christmas dinner at their home, Cody reaches over to feed Kinslee Christmas Day, Sunday, Dec. 25, 2016, in Cape Girardeau. Jessica said family has been a huge help with Kinslee.
"Someone a year ago told me to just chill out and take it a day at a time. Spend time with your entire family, not just her, if not someone is left out," Cody Kinder had said. Cody peeks in to check in on Kinslee and Jessica Sunday, Feb. 26, in Cape Girardeau.
"Someone a year ago told me to just chill out and take it a day at a time. Spend time with your entire family, not just her, if not someone is left out," Cody Kinder had said. Cody peeks in to check in on Kinslee and Jessica Sunday, Feb. 26, in Cape Girardeau.
Kinslee cries as her mom, Jessica, has her sit down with her eye-gaze device Sunday, Feb. 26, in Cape Girardeau. "She has an eye-gazing device, which is a communication device that uses her eyes through a series of choices. It is going to change our family for her to be able to make a decision. Right now, I make every decision for her. She doesn't have her own voice to make her own decision. Just to have her to make her own choices will be amazing for our family," Jessica had said.
Kinslee cries as her mom, Jessica, has her sit down with her eye-gaze device Sunday, Feb. 26, in Cape Girardeau. "She has an eye-gazing device, which is a communication device that uses her eyes through a series of choices. It is going to change our family for her to be able to make a decision. Right now, I make every decision for her. She doesn't have her own voice to make her own decision. Just to have her to make her own choices will be amazing for our family," Jessica had said.
Alisa and her sister, Kinslee, snuggle in bed together and watch television Sunday, Feb. 26, in Cape Girardeau.
Alisa and her sister, Kinslee, snuggle in bed together and watch television Sunday, Feb. 26, in Cape Girardeau.
Cody traps Alisa in his arms as she yells and attempts to get loose Sunday, Feb. 26, in Cape Girardeau.
Cody traps Alisa in his arms as she yells and attempts to get loose Sunday, Feb. 26, in Cape Girardeau.
Jessica reads over Alisa's lines she has to memorize for her play Tuesday, Nov. 8, 2016. "Your children feed off of your energy, if you are upset all the time, they will be upset all the time," Jessica said.
Jessica reads over Alisa's lines she has to memorize for her play Tuesday, Nov. 8, 2016. "Your children feed off of your energy, if you are upset all the time, they will be upset all the time," Jessica said.
Alisa drops down on her knees as she dramatically tries to pick up Kinslee during an awareness dinner at the Eagles Club Friday, Jan. 13, in Cape Girardeau.
Alisa drops down on her knees as she dramatically tries to pick up Kinslee during an awareness dinner at the Eagles Club Friday, Jan. 13, in Cape Girardeau.
Kinslee cries as Jessica attempts to feed her yogurt while she uses her eye-gazing device Friday, July 7, in Cape Girardeau.
Kinslee cries as Jessica attempts to feed her yogurt while she uses her eye-gazing device Friday, July 7, in Cape Girardeau.
While Christmas dinner didn't go as planned, Cody jokes about feeding their family hotdogs as the main dish while laughing in the kitchen with Jessica Sunday, Dec. 25, 2016, in Cape Girardeau.
While Christmas dinner didn't go as planned, Cody jokes about feeding their family hotdogs as the main dish while laughing in the kitchen with Jessica Sunday, Dec. 25, 2016, in Cape Girardeau.
Physical therapist Sarah Hickey, left, and Jessica Kinder, right, hold Kinslee down as she has her height measured during a visit to the Rett Spectrum Clinic Friday, Aug. 25, at the St. Louis Children's Hospital in St. Louis.
Physical therapist Sarah Hickey, left, and Jessica Kinder, right, hold Kinslee down as she has her height measured during a visit to the Rett Spectrum Clinic Friday, Aug. 25, at the St. Louis Children's Hospital in St. Louis.
Moments after Cody Kinder, far right, comes home from work he checks in with his family and picks up his daughter Kinslee Kinder, 2, while his wife Jessica Kinder, far left, and his daughter, Alisa Kinder, 6, middle, look at Alisa's virtual reality glasses Tuesday, Nov. 8, 2016, at their home in Cape Girardeau.
Moments after Cody Kinder, far right, comes home from work he checks in with his family and picks up his daughter Kinslee Kinder, 2, while his wife Jessica Kinder, far left, and his daughter, Alisa Kinder, 6, middle, look at Alisa's virtual reality glasses Tuesday, Nov. 8, 2016, at their home in Cape Girardeau.
"Anything music calms her down 90 percent of the time," Cody Kinder (not pictured) said. Jessica plays Luke Bryan to calm down Kinslee Tuesday, Nov. 8, 2016.
"Anything music calms her down 90 percent of the time," Cody Kinder (not pictured) said. Jessica plays Luke Bryan to calm down Kinslee Tuesday, Nov. 8, 2016.
"You can't think about it three years from now, five years from now — take it a day at a time. You have to think about today and tomorrow not 10 years from now. I dwelled on it and was depressed on it and thought my daughter's never going to get married, never going to have her own children my daughter is never going to have her own life. Today is what matters, not 10 years from now," Jessica Kinder said. Kinslee walks around her physical therapists office during a visit to the Rett Spectrum Clinic Friday, Aug. 25, at the St. Louis Children's Hospital in St. Louis.
"You can't think about it three years from now, five years from now — take it a day at a time. You have to think about today and tomorrow not 10 years from now. I dwelled on it and was depressed on it and thought my daughter's never going to get married, never going to have her own children my daughter is never going to have her own life. Today is what matters, not 10 years from now," Jessica Kinder said. Kinslee walks around her physical therapists office during a visit to the Rett Spectrum Clinic Friday, Aug. 25, at the St. Louis Children's Hospital in St. Louis.
Jessica, Cody and Kinslee meet up with several specialists during a visit to the Rett Spectrum Clinic Friday, Aug. 25, at the St. Louis Children's Hospital in St. Louis.
Jessica, Cody and Kinslee meet up with several specialists during a visit to the Rett Spectrum Clinic Friday, Aug. 25, at the St. Louis Children's Hospital in St. Louis.
"She could be fine when she goes to bed and wake up and never take another step in her life. They call it the monster in their sleep. Which is kind of how it happened with the use of hands, she used her hands fine, she ate she drank and then it stopped," Jessica Kinder said about what happened with Kinslee with her regression of Rett syndrome. Jessica gives Kinslee a kiss on the cheek Wednesday, Oct. 26, 2016, at their home in Cape Girardeau.
"She could be fine when she goes to bed and wake up and never take another step in her life. They call it the monster in their sleep. Which is kind of how it happened with the use of hands, she used her hands fine, she ate she drank and then it stopped," Jessica Kinder said about what happened with Kinslee with her regression of Rett syndrome. Jessica gives Kinslee a kiss on the cheek Wednesday, Oct. 26, 2016, at their home in Cape Girardeau.
After changing a dirty diaper, Jessica and Kinslee play on the floor at their home Tuesday, Nov. 8, 2016. Kinslee was diagnosed with Rett syndrome July 13, 2016, after several months of searching for a correct diagnosis.
After changing a dirty diaper, Jessica and Kinslee play on the floor at their home Tuesday, Nov. 8, 2016. Kinslee was diagnosed with Rett syndrome July 13, 2016, after several months of searching for a correct diagnosis.
Jessica Kinder helps Kinslee up the steps heading inside to Community Day School Thursday, April 20, in Cape Girardeau.
Jessica Kinder helps Kinslee up the steps heading inside to Community Day School Thursday, April 20, in Cape Girardeau.
Cody eats a Cheez-It while he asks Jessica what they will be having for dinner Tuesday, Sept. 6, in Cape Girardeau.
Cody eats a Cheez-It while he asks Jessica what they will be having for dinner Tuesday, Sept. 6, in Cape Girardeau.
Kinslee slides down a slide while doing occupational therapy Thursday, July 13, at the University Autism Center in Cape Girardeau.
Kinslee slides down a slide while doing occupational therapy Thursday, July 13, at the University Autism Center in Cape Girardeau.
Alisa leans against Kinslee while she and Jessica use her eye-gazing device Friday, July 7.
Alisa leans against Kinslee while she and Jessica use her eye-gazing device Friday, July 7.
To get Kinslee to go to bed, Jessica holds her up and rocks her in her arms as music plays in the background. "Sometimes it will take 10 minutes and other times it will take two hours," Jessica said. Part of her routine is to let her unwind to music while she sucks on a bottle.
To get Kinslee to go to bed, Jessica holds her up and rocks her in her arms as music plays in the background. "Sometimes it will take 10 minutes and other times it will take two hours," Jessica said. Part of her routine is to let her unwind to music while she sucks on a bottle.
Cody holds Kinslee's hand as they walk through the hallway Sunday, Feb. 26, in Cape Girardeau. "Seventy-five percent of the time she is this happy little girl, but she can't really communicate," Cody said.
Cody holds Kinslee's hand as they walk through the hallway Sunday, Feb. 26, in Cape Girardeau. "Seventy-five percent of the time she is this happy little girl, but she can't really communicate," Cody said.
Tabitha Austin puts her arm around Kinslee as she plays outside at Community Day School Thursday, April 20, in Cape Girardeau.
Tabitha Austin puts her arm around Kinslee as she plays outside at Community Day School Thursday, April 20, in Cape Girardeau.
Allie Wolz, registered behavior technician, feeds Kinslee yogurt while working on requesting in the session room Thursday, July 13, at the University Autism Center in Cape Girardeau. Requesting works on communication with Kinslee where she uses a button that allows her to request one of two options.
Allie Wolz, registered behavior technician, feeds Kinslee yogurt while working on requesting in the session room Thursday, July 13, at the University Autism Center in Cape Girardeau. Requesting works on communication with Kinslee where she uses a button that allows her to request one of two options.
"We get one date night for us and one date night for Alisa," Jessica Kinder (not pictured) said. Alisa bats at a blow-up dolphin while she and Cody wait in line for the Ferris wheel at Jackson Homecomers Tuesday, July 25, in Uptown Jackson.
"We get one date night for us and one date night for Alisa," Jessica Kinder (not pictured) said. Alisa bats at a blow-up dolphin while she and Cody wait in line for the Ferris wheel at Jackson Homecomers Tuesday, July 25, in Uptown Jackson.
Cody stands behind Kinslee while she uses her eye-gazing device Sunday, Feb. 26, in Cape Girardeau.
Cody stands behind Kinslee while she uses her eye-gazing device Sunday, Feb. 26, in Cape Girardeau.
Allie Wolz, registered behavior technician, plays with Kinslee Kinder Thursday, July 13, at the University Autism Center in Cape Girardeau.
Allie Wolz, registered behavior technician, plays with Kinslee Kinder Thursday, July 13, at the University Autism Center in Cape Girardeau.
Kinslee walks around the kitchen wearing her arm brace on her right hand Sunday, Feb. 26, in Cape Girardeau. Kinslee's mother, Jessica, said the arm brace helps prevent the hand mouthing. That way she concentrates more, she's more alert and more aware when she isn't constantly moving her hand up to her mouth. Kinslee used to wear arm braces on both of her arms but after she had seven seizures on May 6, 2016, she quit using her left arm and eliminated the need for the brace.
Kinslee walks around the kitchen wearing her arm brace on her right hand Sunday, Feb. 26, in Cape Girardeau. Kinslee's mother, Jessica, said the arm brace helps prevent the hand mouthing. That way she concentrates more, she's more alert and more aware when she isn't constantly moving her hand up to her mouth. Kinslee used to wear arm braces on both of her arms but after she had seven seizures on May 6, 2016, she quit using her left arm and eliminated the need for the brace.
Allie Wolz, registered behavior technician, plays with Kinslee Kinder Thursday, July 13, at the University Autism Center in Cape Girardeau.
Allie Wolz, registered behavior technician, plays with Kinslee Kinder Thursday, July 13, at the University Autism Center in Cape Girardeau.
Jessica feeds Kinslee dinner Wednesday, Oct. 26, 2016, in Cape Girardeau.
Jessica feeds Kinslee dinner Wednesday, Oct. 26, 2016, in Cape Girardeau.
Jessica Kinder straps Kinslee in a carseat after a birthday celebration at the Eagles Club Saturday, Feb. 11, in Cape Girardeau.
Jessica Kinder straps Kinslee in a carseat after a birthday celebration at the Eagles Club Saturday, Feb. 11, in Cape Girardeau.
Cody lies down with his daughters Kinslee, center, and Alisa, left, before putting Kinslee to bed Sunday, Feb. 26. When Kinslee was younger he used to have to drive her around in his truck to get her to fall asleep, now she will listen to music in her room.
Cody lies down with his daughters Kinslee, center, and Alisa, left, before putting Kinslee to bed Sunday, Feb. 26. When Kinslee was younger he used to have to drive her around in his truck to get her to fall asleep, now she will listen to music in her room.
Dr. Robin Ryther, left, gives good news that Kinslee was not having mini seizures but instead multifocal spikes to Cody and Jessica as Kinslee is fast asleep in her stroller during a visit to the Rett Spectrum Clinic Friday, Aug. 25, at the St. Louis Children's Hospital in St. Louis.
Dr. Robin Ryther, left, gives good news that Kinslee was not having mini seizures but instead multifocal spikes to Cody and Jessica as Kinslee is fast asleep in her stroller during a visit to the Rett Spectrum Clinic Friday, Aug. 25, at the St. Louis Children's Hospital in St. Louis.
Kinslee snuggles up with Santa while he visits their home Tuesday, Dec. 20, 2016.
Kinslee snuggles up with Santa while he visits their home Tuesday, Dec. 20, 2016.
Jessica and Kinslee listen to music on her phone while Alisa plays on an iPad device Tuesday, Dec. 20, 2016.
Jessica and Kinslee listen to music on her phone while Alisa plays on an iPad device Tuesday, Dec. 20, 2016.
Family members open gifts on Christmas Day Sunday, Dec. 25, 2016, in Cape Girardeau.
Family members open gifts on Christmas Day Sunday, Dec. 25, 2016, in Cape Girardeau.
Dean Best and Michael Taber play with an electronic device with Kinslee Christmas Day Sunday, Dec. 25, 2016, in Cape Girardeau.
Dean Best and Michael Taber play with an electronic device with Kinslee Christmas Day Sunday, Dec. 25, 2016, in Cape Girardeau.
"If we knew a year ago what we do today, there is light at the end of the tunnel," Jessica said. Jessica holds Kinslee as she brushes her teeth Thursday, April 20.
"If we knew a year ago what we do today, there is light at the end of the tunnel," Jessica said. Jessica holds Kinslee as she brushes her teeth Thursday, April 20.
Kinslee smiles as she plays around at Community Day School Thursday, April 20, in Cape Girardeau.
Kinslee smiles as she plays around at Community Day School Thursday, April 20, in Cape Girardeau.
Cody lifts up Kinslee after he gets home from work Tuesday, Nov. 8, 2016, in Cape Girardeau.
Cody lifts up Kinslee after he gets home from work Tuesday, Nov. 8, 2016, in Cape Girardeau.
Kinslee lets out a cry as Jessica and Cody listen to occupational therapist Nicole Weckherlin Friday, Aug. 25, at the Rett Spectrum Clinic at the St. Louis Children's Hospital in St. Louis.
Kinslee lets out a cry as Jessica and Cody listen to occupational therapist Nicole Weckherlin Friday, Aug. 25, at the Rett Spectrum Clinic at the St. Louis Children's Hospital in St. Louis.
Kinslee looks at a reflection of herself from her eye-gaze device Friday, July 7.
Kinslee looks at a reflection of herself from her eye-gaze device Friday, July 7.
"It takes us both to take care of her. It does play a toll on us a lot. But we figure it out, and build from there," Cody Kinder said about raising a daughter with Rett syndrome. Cody and Jessica kiss their daughter Kinslee during a Valentine's Day Dinner and Dance to raise awareness and celebrate Kinslee's birthday at the Eagles Club Saturday, Feb. 11, in Cape Girardeau.
"It takes us both to take care of her. It does play a toll on us a lot. But we figure it out, and build from there," Cody Kinder said about raising a daughter with Rett syndrome. Cody and Jessica kiss their daughter Kinslee during a Valentine's Day Dinner and Dance to raise awareness and celebrate Kinslee's birthday at the Eagles Club Saturday, Feb. 11, in Cape Girardeau.
Jessica lies with Kinslee as she sucks on a bottle moments before she falls asleep Tuesday, Sept. 6, in Cape Girardeau.
Jessica lies with Kinslee as she sucks on a bottle moments before she falls asleep Tuesday, Sept. 6, in Cape Girardeau.
"She's taught me life more than anyone else every could," Jessica said. Jessica kisses Kinslee while holding her in her dining room Sunday, Dec. 25, 2016.
"She's taught me life more than anyone else every could," Jessica said. Jessica kisses Kinslee while holding her in her dining room Sunday, Dec. 25, 2016.
Jessica Kinder holds Kinslee's hand as they get in the car to go to Community Day School Thursday, April 20, in Cape Girardeau. Jessica is now a stay-at-home mom and no longer brings Kinslee to day care.
Jessica Kinder holds Kinslee's hand as they get in the car to go to Community Day School Thursday, April 20, in Cape Girardeau. Jessica is now a stay-at-home mom and no longer brings Kinslee to day care.
Allie Wolz, registered behavior technician, plays with Kinslee Kinder Thursday, July 13, at the University Autism Center in Cape Girardeau. Although Kinslee isn't diagnosed with autism, a lot of similar communicational learning skills can still be met at the center. Kinslee does 16 hours of therapy a week with 12 hours at the Autism Center and four at home.
Allie Wolz, registered behavior technician, plays with Kinslee Kinder Thursday, July 13, at the University Autism Center in Cape Girardeau. Although Kinslee isn't diagnosed with autism, a lot of similar communicational learning skills can still be met at the center. Kinslee does 16 hours of therapy a week with 12 hours at the Autism Center and four at home.
Cody, Jessica and Kinslee talk with occupational therapist Nicole Weckherlin Friday, Aug. 25,  at the Rett Spectrum Clinic at the St. Louis Children's Hospital in St. Louis. Kinslee will go to the clinic a few times a year to check up with her dietitian, physical therapists and other therapists that she needs.
Cody, Jessica and Kinslee talk with occupational therapist Nicole Weckherlin Friday, Aug. 25,  at the Rett Spectrum Clinic at the St. Louis Children's Hospital in St. Louis. Kinslee will go to the clinic a few times a year to check up with her dietitian, physical therapists and other therapists that she needs.
Kinslee sits in Jessica's lap as she gets a kiss on the mouth by their dog, Apache, Friday, July 7, at their home in Cape Girardeau.
Kinslee sits in Jessica's lap as she gets a kiss on the mouth by their dog, Apache, Friday, July 7, at their home in Cape Girardeau.
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On July 13, 2016, Jessica Kinder found out her daughter, Kinslee, was diagnosed with Rett syndrome. Rett syndrome is a rare neurological disorder that causes problems in brain function that are responsible for learning, speech, sensory, mood, movement and several others.

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