Caring for Caroline
Donation protected
Family and Friends of the Park Family are hosting an event, “Caring for Caroline” at Atomic Cowboy in St. Louis, on Thursday, August 13 2015, to raise funds to benefit Caroline Park and Batten Disease Support and Research Association. All donated funds go directly to supporting Caroline and BDRSA. www.bdrsa.org
We would like to request a donation &/or contribution for this event. Please contact me if you would like to donate an item for our #Caringforcaroline auction event on Aug. 13. Your support will definitely make a difference in Caroline’s life! Her family will use the donated funds from Go Fund Me and our event to purchase a lift van for transporting Caroline. Handicap lift vans can cost between $60,000-$70,000.
Caroline’s story: Caroline was born a happy, healthy baby. When she was in kindergarten she started demonstrating some behaviors and learning disabilities and was diagnosed with autism. She developed slowly, however she did continue to make slow progress in school. In second grade, she began having Grand-Mal seizures and was diagnosed with a seizure disorder, which for the most part has been managed with medication. She has had several hospital stays due to complications from medicine, however they have been stable for the past year. In third grade she ran in 2 - 5K runs with her older sister, who could barely keep up with her, she was so fast. By fourth grade she started having difficulty with balance and was not able to run anymore. She saw doctors in the movement disorder clinic at St. Louis Children’s hospital. After much testing, including MRI and spinal taps, no reason for her motor regression could be found. When she was in fifth grade we started noticing she was having difficulty seeing and locating objects. She received a retinal test and the results showed no retinal response. Caroline was blind. Because of the retinal test, they suggested she be tested for something called Batten Disease. She received a genetic blood test and in July of 2013 she was diagnosed positive for Batten Disease. By this time she was using a walker for stability to walk, and several months after her diagnosis she was using a wheelchair full time. She is currently 14 years old, unable to walk and totally blind. Her speech has slowed to 1-2 words and her mental ability has diminished significantly. There is no cure for Batten Disease. She will eventually need a feeding tube and will be bed ridden. Caroline attends a school for special needs children in St. Louis County.
What is Battens Disease: Batten disease is one of approximately 50 diseases called lysosomal storage disorders (LSD), meaning that genetic mutations disrupt the cells ability to dispose of wastes. With Batten disease, cells are thrown out of balance with the build-up of proteins and lipids (fats).Children with Batten disease have inherited genetic material from their parents that may take some years to come to bear in their everyday lives. And when it does, families are often in shock when they learn how a normal child could change quickly, and without seeming cause.
Because of these damaged cells, patients with Batten disease suffer progressive neurological impairment, which includes:
Seizures
Visual impairment/blindness
Personality and behavior changes
Dementia
Loss of motor skills and the ability to walk, talk and communicate.
Because of widely varying genetic mutations, the arc of Batten disease can vary tremendously for each person. Sadly, until more strides are made in research, treatments and cures, Batten results in an early death of our children usually by their early twenties.
We hope that we can count on your support. Again, thank you for your support of this most important effort to provide comfort and solace for the Park family.
Fondly,
Kymberly LoCigno
Kara Chiumento
Laura Erickson
Jeff Koenigs
Caring for Caroline – Fundraiser Volunteers
We would like to request a donation &/or contribution for this event. Please contact me if you would like to donate an item for our #Caringforcaroline auction event on Aug. 13. Your support will definitely make a difference in Caroline’s life! Her family will use the donated funds from Go Fund Me and our event to purchase a lift van for transporting Caroline. Handicap lift vans can cost between $60,000-$70,000.
Caroline’s story: Caroline was born a happy, healthy baby. When she was in kindergarten she started demonstrating some behaviors and learning disabilities and was diagnosed with autism. She developed slowly, however she did continue to make slow progress in school. In second grade, she began having Grand-Mal seizures and was diagnosed with a seizure disorder, which for the most part has been managed with medication. She has had several hospital stays due to complications from medicine, however they have been stable for the past year. In third grade she ran in 2 - 5K runs with her older sister, who could barely keep up with her, she was so fast. By fourth grade she started having difficulty with balance and was not able to run anymore. She saw doctors in the movement disorder clinic at St. Louis Children’s hospital. After much testing, including MRI and spinal taps, no reason for her motor regression could be found. When she was in fifth grade we started noticing she was having difficulty seeing and locating objects. She received a retinal test and the results showed no retinal response. Caroline was blind. Because of the retinal test, they suggested she be tested for something called Batten Disease. She received a genetic blood test and in July of 2013 she was diagnosed positive for Batten Disease. By this time she was using a walker for stability to walk, and several months after her diagnosis she was using a wheelchair full time. She is currently 14 years old, unable to walk and totally blind. Her speech has slowed to 1-2 words and her mental ability has diminished significantly. There is no cure for Batten Disease. She will eventually need a feeding tube and will be bed ridden. Caroline attends a school for special needs children in St. Louis County.
What is Battens Disease: Batten disease is one of approximately 50 diseases called lysosomal storage disorders (LSD), meaning that genetic mutations disrupt the cells ability to dispose of wastes. With Batten disease, cells are thrown out of balance with the build-up of proteins and lipids (fats).Children with Batten disease have inherited genetic material from their parents that may take some years to come to bear in their everyday lives. And when it does, families are often in shock when they learn how a normal child could change quickly, and without seeming cause.
Because of these damaged cells, patients with Batten disease suffer progressive neurological impairment, which includes:
Seizures
Visual impairment/blindness
Personality and behavior changes
Dementia
Loss of motor skills and the ability to walk, talk and communicate.
Because of widely varying genetic mutations, the arc of Batten disease can vary tremendously for each person. Sadly, until more strides are made in research, treatments and cures, Batten results in an early death of our children usually by their early twenties.
We hope that we can count on your support. Again, thank you for your support of this most important effort to provide comfort and solace for the Park family.
Fondly,
Kymberly LoCigno
Kara Chiumento
Laura Erickson
Jeff Koenigs
Caring for Caroline – Fundraiser Volunteers
Organizer
KARA CHIUMENTO
Organizer
Kirkwood, MO