Entrepreneur inspired after son diagnosed with Prader-Willi Syndrome
NEW HARTFORD – Linsey Grover was already working as a scientist and proving herself capable of success when, in 2011, she gave birth to a baby boy and found she was capable of the extraordinary. Her son, Layne, was born with Prader-Willi Syndrome (PWS).
Resulting from an abnormality in the fifteenth chromosome, the child’s hypothalamus is affected and creates a myriad of problems for the child as an infant and throughout his/her life. According to the Prader-Willi Association, approximately 1 in 15,000 babies are born with PWS each year. The website states, “PWS typically causes low muscle tone, short stature if not treated with growth hormone, incomplete sexual development, and a chronic feeling of hunger that, coupled with a metabolism that utilizes drastically fewer calories than normal, can lead to excessive eating and life-threatening obesity.”
Many parents of children of PWS are overwhelmed upon first hearing the news. In an interview Amber Battista, also a mother of a child with PWS, reflected on first learning of her daughter’s condition. “I was completely devastated. We didn’t know how to take it,” she said.
The Prader-Willi Syndrome Association highlighted Georgie’s story, also a child with PWS, by writing a letter in his “voice.” The letter touched on hyperphagia, a huge factor for PWS children when they are older. “Even after a big Thanksgiving meal, I’ll feel hungry. Ironic, isn’t it? A baby who was ‘content to starve’ will one day never be finished eating. When this happens, mommy may have to lock the cupboards and the refrigerator,” states the letter.
When he was first born, Layne had low muscle tone and could barely eat or breath and required a feeding tube and oxygen tank. After her three month maternity leave ran out, Grover decided to pursue her own jewelry business, rather than leaving her son to be cared for in the NICU. When asked if she would have stayed at her previous job Grover replied, “To me it wasn’t even a possibility.”
A graduate of Sherburne-Earlville, Grover had dreamed of continuing her career as a scientist, but was drawn to jewelry upon learning of her son’s condition. “I’ve always made handmade jewelry, since I was younger. I started making more jewelry to make money, which took off,” she said.
Her company, Linsey Layne Jewelry, grew so much that she created a website and later on opened her own store. This month Grover will celebrate the anniversary of Linsey Layne Boutique, which she opened in New Hartford in April of last year.
Grover’s boutique has satisfied both the demand from her customers and her dedication to Layne’s well-being. Grover is able to spend two week days with her son and her schedule is flexible enough so she can make all of Layne’s appointments. Fortunately, most of Layne’s healthcare expenses are covered through insurance, but Grover still has to deal with an excessive amount of cost traveling to different states for Layne’s treatments.
While Grover has made great strides as an individual, she has also received support from PWS support groups and the local community. She explained that each year she organizes a walk. Each walk has resulted in $20,000, which was donated to the Foundation for Prader-Willi Research. This year the walk will be held in August and Grover hopes for a similar turnout.
Grover is also excited about Linsey Layne Boutique. “My boutique is really small and it’s set up like your dream closet. It’s got a vintage vibe,” she said.
On top of all of Layne’s appointments, Grover makes time for regular trips to New York City to attend fashion shows. There she is able to research current fashion trends and find great pieces for her store. Overall, Grover is remaining strong and positive.
“I feel blessed that I can do this and stay with Layne and be successful,” she said. “I want to inspire people, especially women, to take chances, to always dress up, to create their own happiness, to never give up on their dreams and to stay positive through their worst nightmare.”
Visit https://www.facebook.com/LinseyLayneJewelry or linseylaynejewelry.com for more information on Grover’s boutique. Anyone interested in joining the walk for PWS in August should message Grover.
Visit http://www.fpwr.org/ for more information on PWS or to donate towards research.
Resulting from an abnormality in the fifteenth chromosome, the child’s hypothalamus is affected and creates a myriad of problems for the child as an infant and throughout his/her life. According to the Prader-Willi Association, approximately 1 in 15,000 babies are born with PWS each year. The website states, “PWS typically causes low muscle tone, short stature if not treated with growth hormone, incomplete sexual development, and a chronic feeling of hunger that, coupled with a metabolism that utilizes drastically fewer calories than normal, can lead to excessive eating and life-threatening obesity.”
Many parents of children of PWS are overwhelmed upon first hearing the news. In an interview Amber Battista, also a mother of a child with PWS, reflected on first learning of her daughter’s condition. “I was completely devastated. We didn’t know how to take it,” she said.
The Prader-Willi Syndrome Association highlighted Georgie’s story, also a child with PWS, by writing a letter in his “voice.” The letter touched on hyperphagia, a huge factor for PWS children when they are older. “Even after a big Thanksgiving meal, I’ll feel hungry. Ironic, isn’t it? A baby who was ‘content to starve’ will one day never be finished eating. When this happens, mommy may have to lock the cupboards and the refrigerator,” states the letter.
When he was first born, Layne had low muscle tone and could barely eat or breath and required a feeding tube and oxygen tank. After her three month maternity leave ran out, Grover decided to pursue her own jewelry business, rather than leaving her son to be cared for in the NICU. When asked if she would have stayed at her previous job Grover replied, “To me it wasn’t even a possibility.”
A graduate of Sherburne-Earlville, Grover had dreamed of continuing her career as a scientist, but was drawn to jewelry upon learning of her son’s condition. “I’ve always made handmade jewelry, since I was younger. I started making more jewelry to make money, which took off,” she said.
Her company, Linsey Layne Jewelry, grew so much that she created a website and later on opened her own store. This month Grover will celebrate the anniversary of Linsey Layne Boutique, which she opened in New Hartford in April of last year.
Grover’s boutique has satisfied both the demand from her customers and her dedication to Layne’s well-being. Grover is able to spend two week days with her son and her schedule is flexible enough so she can make all of Layne’s appointments. Fortunately, most of Layne’s healthcare expenses are covered through insurance, but Grover still has to deal with an excessive amount of cost traveling to different states for Layne’s treatments.
While Grover has made great strides as an individual, she has also received support from PWS support groups and the local community. She explained that each year she organizes a walk. Each walk has resulted in $20,000, which was donated to the Foundation for Prader-Willi Research. This year the walk will be held in August and Grover hopes for a similar turnout.
Grover is also excited about Linsey Layne Boutique. “My boutique is really small and it’s set up like your dream closet. It’s got a vintage vibe,” she said.
On top of all of Layne’s appointments, Grover makes time for regular trips to New York City to attend fashion shows. There she is able to research current fashion trends and find great pieces for her store. Overall, Grover is remaining strong and positive.
“I feel blessed that I can do this and stay with Layne and be successful,” she said. “I want to inspire people, especially women, to take chances, to always dress up, to create their own happiness, to never give up on their dreams and to stay positive through their worst nightmare.”
Visit https://www.facebook.com/LinseyLayneJewelry or linseylaynejewelry.com for more information on Grover’s boutique. Anyone interested in joining the walk for PWS in August should message Grover.
Visit http://www.fpwr.org/ for more information on PWS or to donate towards research.
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