Amazing Grace
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This is Grace Flynn. She is 13 years-old and was diagnosed with Autoimmune Encephalitis in January 2018.
Grace is the daughter of Kevin and Emily Flynn and an artist with a love for animals and her four younger sisters. Grace's symptoms began five years ago with bluish feet indicating Raynaud's disease and sores on her feet that wouldn't heal.
In 2015, Grace took a turn for the worse. She developed consistent patterns of a major mood disturbance and insomnia followed by a rapid decline in cognitive abilities, high fevers, confusion, altered mental status, and long periods of sleep. The cycle would repeat itself every 7-10 days. She also lost much of her hair.
After seeing specialists in San Francisco and continued communication with the Pediatrician, Kevin and Emily turned to a team at Primary Children's Medical Center in Salt Lake City, Utah consisting of a Pediatric Rheumatologist and Pediatric Neurologist.
In January, 2018, Grace returned to SLC to see the team. Initial scans and results looked great; however, two weeks later a call came from the neurologist. Grace's encephalopathy panel came back with two positive antibodies: GAD65 and CASPR2. The diagnosis is Autoimmune Encephalitis. Untreated, Grace’s body will attack her brain and cause permanent damage. 
In February, 2018, she returned to Salt Lake for admission to Primary Children's Hospital for a spinal tap examining the brain fluid, ultrasounds, MRIs and PET scans to find the cause of one of the antibodies. Doctors worried that it was a tumor.
Once a tumor had been ruled out, the doctors started her on a 3-year treatment plan to suppress the immune system and keep it from attacking healthy brain cells. This treatment consists of a daily immune suppressive medication, steroids, monthly infusions of IVIG, and an additional infusion twice a year of Rituxan - a cancer medicine that depletes the body of B-cells that are responsible for creating antibodies.
Grace has to travel to Salt Lake City routinely for check ups and evaluations for long-term outcome and care of the disease. Cognitive Rehabilitation Therapy will also be an important aspect of her recovery from the acquired brain injury.
As this disease was only recently discovered, there is still much to learn about what happens to patients long-term.
We are asking family and friends to help where they can with costs of these treatments as well as travel costs. Please contribute if you can. Additionally, prayers on behalf of the Ludlow/Flynn family are much appreciated!
Thank you for your love and support!!!
Grace is the daughter of Kevin and Emily Flynn and an artist with a love for animals and her four younger sisters. Grace's symptoms began five years ago with bluish feet indicating Raynaud's disease and sores on her feet that wouldn't heal. In 2015, Grace took a turn for the worse. She developed consistent patterns of a major mood disturbance and insomnia followed by a rapid decline in cognitive abilities, high fevers, confusion, altered mental status, and long periods of sleep. The cycle would repeat itself every 7-10 days. She also lost much of her hair.After seeing specialists in San Francisco and continued communication with the Pediatrician, Kevin and Emily turned to a team at Primary Children's Medical Center in Salt Lake City, Utah consisting of a Pediatric Rheumatologist and Pediatric Neurologist. In January, 2018, Grace returned to SLC to see the team. Initial scans and results looked great; however, two weeks later a call came from the neurologist. Grace's encephalopathy panel came back with two positive antibodies: GAD65 and CASPR2. The diagnosis is Autoimmune Encephalitis. Untreated, Grace’s body will attack her brain and cause permanent damage. In February, 2018, she returned to Salt Lake for admission to Primary Children's Hospital for a spinal tap examining the brain fluid, ultrasounds, MRIs and PET scans to find the cause of one of the antibodies. Doctors worried that it was a tumor.Once a tumor had been ruled out, the doctors started her on a 3-year treatment plan to suppress the immune system and keep it from attacking healthy brain cells. This treatment consists of a daily immune suppressive medication, steroids, monthly infusions of IVIG, and an additional infusion twice a year of Rituxan - a cancer medicine that depletes the body of B-cells that are responsible for creating antibodies.Grace has to travel to Salt Lake City routinely for check ups and evaluations for long-term outcome and care of the disease. Cognitive Rehabilitation Therapy will also be an important aspect of her recovery from the acquired brain injury.As this disease was only recently discovered, there is still much to learn about what happens to patients long-term.We are asking family and friends to help where they can with costs of these treatments as well as travel costs. Please contribute if you can. Additionally, prayers on behalf of the Ludlow/Flynn family are much appreciated!
Thank you for your love and support!!!
Organisateur et bénéficiaire
Alicia Allen Lund
Organisateur
Reno, NV
Emily Flynn
Bénéficiaire
