Bravery For Avery
Donation protected
The staff at Forest Park Elementary School in North Kingstown, along with the North Providence Fire Department, will be hosting a fundraising event on Friday, September 27, 2019, at the Quonset O Club in North Kingstown, in order to help support Lindsey Coupe, teacher at Forest Park and Kevin Coupe, Rescue Lieutenant on the North Providence Fire Department, as they care for their infant daughter, Avery.
Avery was 4 months old when Lindsey and Kevin began to notice that Avery was regressing in her motor development. What first began as feeding difficulties, which was thought to be caused by a cold, quickly turned into a 5-month journey to determine why Avery was not meeting milestones. Avery was first hospitalized at Hasbro Children’s Hospital due to dehydration. Since the hospital stay, Avery began receiving many tests and procedures in order to determine and diagnose the reasons for Avery’s regression. After an MRI and genetic testing in June 2019, Avery was diagnosed with a rare, genetic disorder called Krabbe Disease. Krabbe Disease is a type of Leukodystrophy which is a progressive, metabolic, genetic disease that affects the brain, spinal cord and often the peripheral nerves. Each type of Leukodystrophy is caused by a specific gene abnormality that leads to abnormal development or destruction of white matter of the brain. The gene for Krabbe disease can be found on chromosome 14. A child needs to get an abnormal gene from both parents to inherit the disease and through testing, it was found that both Lindsey and Kevin are carriers of this abnormal gene. The abnormal gene results in a shortage of an important enzyme that the body needs called galactosylceramidase (GALC). There is currently no cure for Krabbe disease. Parents of children diagnosed with Krabbe receive guidance and support in the form of care plans to treat symptoms and support quality of life.
Avery had a G-tube placed in May 2019 and also began Speech, Occupational and Physical therapy. The family traveled to Pittsburgh Children’s Hospital to meet with one of the top doctors in the world that specializes in White Matter Diseases and Krabbe Disease where they learned about the progression of the disease and how to put together a care plan to meet Avery’s unique and delicate needs.
Since diagnosis, the Coupe family decided that it would be best if Lindsey took a year leave from her position as a special education teacher, at Forest Park. The Coupes also have a 3-year old son, KJ, to care for. This decision was a difficult decision for the Coupe family to make but they knew it was necessary in order to raise and care for KJ and Avery as well as to implement Avery’s care plan and to spend as much time together as a family.
The staff at Forest Park Elementary School along with the North Providence Fire Department would like to raise money to support the Coupe Family. The money raised will help pay medical expenses, travel for medical care, as well as to supplement the loss of Lindsey’s income.
Please join Forest Park and the North Providence Fire Department in supporting Bravery for Avery.
We, along with the Coupe family thank you for your donation.
Avery was 4 months old when Lindsey and Kevin began to notice that Avery was regressing in her motor development. What first began as feeding difficulties, which was thought to be caused by a cold, quickly turned into a 5-month journey to determine why Avery was not meeting milestones. Avery was first hospitalized at Hasbro Children’s Hospital due to dehydration. Since the hospital stay, Avery began receiving many tests and procedures in order to determine and diagnose the reasons for Avery’s regression. After an MRI and genetic testing in June 2019, Avery was diagnosed with a rare, genetic disorder called Krabbe Disease. Krabbe Disease is a type of Leukodystrophy which is a progressive, metabolic, genetic disease that affects the brain, spinal cord and often the peripheral nerves. Each type of Leukodystrophy is caused by a specific gene abnormality that leads to abnormal development or destruction of white matter of the brain. The gene for Krabbe disease can be found on chromosome 14. A child needs to get an abnormal gene from both parents to inherit the disease and through testing, it was found that both Lindsey and Kevin are carriers of this abnormal gene. The abnormal gene results in a shortage of an important enzyme that the body needs called galactosylceramidase (GALC). There is currently no cure for Krabbe disease. Parents of children diagnosed with Krabbe receive guidance and support in the form of care plans to treat symptoms and support quality of life.
Avery had a G-tube placed in May 2019 and also began Speech, Occupational and Physical therapy. The family traveled to Pittsburgh Children’s Hospital to meet with one of the top doctors in the world that specializes in White Matter Diseases and Krabbe Disease where they learned about the progression of the disease and how to put together a care plan to meet Avery’s unique and delicate needs.
Since diagnosis, the Coupe family decided that it would be best if Lindsey took a year leave from her position as a special education teacher, at Forest Park. The Coupes also have a 3-year old son, KJ, to care for. This decision was a difficult decision for the Coupe family to make but they knew it was necessary in order to raise and care for KJ and Avery as well as to implement Avery’s care plan and to spend as much time together as a family.
The staff at Forest Park Elementary School along with the North Providence Fire Department would like to raise money to support the Coupe Family. The money raised will help pay medical expenses, travel for medical care, as well as to supplement the loss of Lindsey’s income.
Please join Forest Park and the North Providence Fire Department in supporting Bravery for Avery.
We, along with the Coupe family thank you for your donation.
Organizer
Damien Edsall
Organizer
North Kingstown, RI
