Shannon McCook Young Mom & Rare Autoimmune Disease
Donation protected
Hello, we are Friends & Family of Shannon McCook.
Shannon is a 36 year old mother, wife, daughter and a beloved friend to many.
She lives with her husband Ryan and their 2 year old daughter, Addie.
Shannon was out shopping with Ryan and Addie when the unimaginable happened.
While looking for a cuckoo clock for Addie, having just let go of her hand, Shannon had a sudden and life-changing "tonic-clonic seizure" - she entered a state of intense, shaking convulsion, bleeding from the mouth, and stopped breathing. She collapsed in the toy store. The incident lasted around seven minutes, and it took her 40 minutes to fully wake up. She was immediately rushed to the hospital. And this was just the beginning.
Over the next several months, Shannon was hospitalized for 64 days, 45 of which were ICU. She had 50+ seizures, entered a 9-day coma, had a life-threatening drug reaction called DRESS Syndrome, developed pneumonia, and battled with trauma-inducing psychosis and hallucinations for weeks. For some of this time, she didn’t recognize her own husband or daughter.
Since being discharged from the hospital, she has had an additional 97 documented seizures (Sept 1, 2019-Feb 18, 2020). They are not yet under control.
The incident has left her with an Acquired Brain Injury, and unable to return to work.
DIAGNOSIS & OUTLOOK
The hospital couldn’t figure out what was happening, but after months of grueling tests (100+ blood draws, 6 MRIs, 7 spinal taps, etc) Shannon is close to understanding what may have been the cause: Common-Variable Immune Deficiency. CVID is a rare genetic mutation at birth. Shannon was completely unaware, and results are pending confirming whether she has primary from birth or secondary due to treatments.
What’s stemmed from this likely-CVID and a virus she contacted last year is another rare condition that has been extremely difficult to diagnosis: an auto-immune disease that attacks part of her brain and causes seizures and cognitive impairment.
It’s called Autoimmune Encephalitis.
This is what she is currently battling.
Most people haven’t heard of either of these.
Having both of these conditions is very, very rare.
This is what it takes to maintain Shannon’s health:
· 20+ pills twice a day for Autoimmune Encephalitis
· Extremely expensive IV medication (Rituxamab) every 6 months
· IV Immunoglobin (IVIG) infusion every 3-4 weeks
· Frequent visits to medical teams across multiple disciplines (and cities)
· Weekly Rehab appointments for Speech, Occupational and Neuropsych therapy
· Hospital / ER visits for any sudden and serious seizures
Shannon receives her treatments as an outpatient as her and Ryan rebuild their family life. She's had to re-learn basic skills: math, reading/writing, walking, balance, and memory recall. She does not remember most of the past year, and is working on moving past the trauma.Their daughter is struggling to understand what's going on, but she is a wonderful, loving, sunshine-filled little girl. She is very much looking forward to having her Mommy back as she remembers her.
All told, Shannon has made a major comeback: a true warrior and inspiration, whose worked incredibly hard to overcome these obstacles. Recovery will be a long road - she still has seizures weekly - and some of her therapy may be for life.
As every day brings new challenges, her friends and family have come together to try and help with their loss of income and this new-found, intense financial burden.
Let's help them get some of their sunshine back.
YOUR GENEROSITY AND SUPPORT
Please share this page!
Your incredibly generous support will help cover the unexpected and on-going costs of medical and healthcare expenses such as :
· emergency ambulance rides for intense seizures (not insured)
· monthly infusions (fighting with insurance. Treatments range from $5k-$100k)
· monthly drug prescriptions (approx $500 a month)
· weekly Rehabilitation appointments (only partially covered)
· Neuro Psychology appointments (not covered, approx $800 a month)
· daycare for Addie and other health-and-home related needs due to loss of income
· travel expenses to/from each clinic, including: autoimmune, neurology, immunology, psychiatry, dermatology, rehabilitation, neuro psychology, and infusion center
THANK YOU
Shannon is still suffering from seizures and going through brain injury recovery, and we are learning CVID infusions may be life long. Anything you can contribute would be incredibly appreciated as the family works to put their lives back together and re-calibrate to their new normal. The McCook-Petersons would like to thank you personally for the generosity, your care, love, support, and the hope you provide their future. It is Shannon's personal wish to spread awareness of Autoimmune Encephalitis, to be an advocate for others and to aid those in the future with faster diagnosis and better treatment.
Shannon is a 36 year old mother, wife, daughter and a beloved friend to many.
She lives with her husband Ryan and their 2 year old daughter, Addie.
Shannon was out shopping with Ryan and Addie when the unimaginable happened.
While looking for a cuckoo clock for Addie, having just let go of her hand, Shannon had a sudden and life-changing "tonic-clonic seizure" - she entered a state of intense, shaking convulsion, bleeding from the mouth, and stopped breathing. She collapsed in the toy store. The incident lasted around seven minutes, and it took her 40 minutes to fully wake up. She was immediately rushed to the hospital. And this was just the beginning.
Over the next several months, Shannon was hospitalized for 64 days, 45 of which were ICU. She had 50+ seizures, entered a 9-day coma, had a life-threatening drug reaction called DRESS Syndrome, developed pneumonia, and battled with trauma-inducing psychosis and hallucinations for weeks. For some of this time, she didn’t recognize her own husband or daughter.
Since being discharged from the hospital, she has had an additional 97 documented seizures (Sept 1, 2019-Feb 18, 2020). They are not yet under control.
The incident has left her with an Acquired Brain Injury, and unable to return to work.
DIAGNOSIS & OUTLOOK
The hospital couldn’t figure out what was happening, but after months of grueling tests (100+ blood draws, 6 MRIs, 7 spinal taps, etc) Shannon is close to understanding what may have been the cause: Common-Variable Immune Deficiency. CVID is a rare genetic mutation at birth. Shannon was completely unaware, and results are pending confirming whether she has primary from birth or secondary due to treatments.
What’s stemmed from this likely-CVID and a virus she contacted last year is another rare condition that has been extremely difficult to diagnosis: an auto-immune disease that attacks part of her brain and causes seizures and cognitive impairment.
It’s called Autoimmune Encephalitis.
This is what she is currently battling.
Most people haven’t heard of either of these.
Having both of these conditions is very, very rare.
This is what it takes to maintain Shannon’s health:
· 20+ pills twice a day for Autoimmune Encephalitis
· Extremely expensive IV medication (Rituxamab) every 6 months
· IV Immunoglobin (IVIG) infusion every 3-4 weeks
· Frequent visits to medical teams across multiple disciplines (and cities)
· Weekly Rehab appointments for Speech, Occupational and Neuropsych therapy
· Hospital / ER visits for any sudden and serious seizures
Shannon receives her treatments as an outpatient as her and Ryan rebuild their family life. She's had to re-learn basic skills: math, reading/writing, walking, balance, and memory recall. She does not remember most of the past year, and is working on moving past the trauma.Their daughter is struggling to understand what's going on, but she is a wonderful, loving, sunshine-filled little girl. She is very much looking forward to having her Mommy back as she remembers her.
All told, Shannon has made a major comeback: a true warrior and inspiration, whose worked incredibly hard to overcome these obstacles. Recovery will be a long road - she still has seizures weekly - and some of her therapy may be for life.
As every day brings new challenges, her friends and family have come together to try and help with their loss of income and this new-found, intense financial burden.
Let's help them get some of their sunshine back.
YOUR GENEROSITY AND SUPPORT
Please share this page!
Your incredibly generous support will help cover the unexpected and on-going costs of medical and healthcare expenses such as :
· emergency ambulance rides for intense seizures (not insured)
· monthly infusions (fighting with insurance. Treatments range from $5k-$100k)
· monthly drug prescriptions (approx $500 a month)
· weekly Rehabilitation appointments (only partially covered)
· Neuro Psychology appointments (not covered, approx $800 a month)
· daycare for Addie and other health-and-home related needs due to loss of income
· travel expenses to/from each clinic, including: autoimmune, neurology, immunology, psychiatry, dermatology, rehabilitation, neuro psychology, and infusion center
THANK YOU
Shannon is still suffering from seizures and going through brain injury recovery, and we are learning CVID infusions may be life long. Anything you can contribute would be incredibly appreciated as the family works to put their lives back together and re-calibrate to their new normal. The McCook-Petersons would like to thank you personally for the generosity, your care, love, support, and the hope you provide their future. It is Shannon's personal wish to spread awareness of Autoimmune Encephalitis, to be an advocate for others and to aid those in the future with faster diagnosis and better treatment.
Fundraising team: Peterson (2)
Dan Denegre
Organizer
Alameda, CA
Ryan Paul Peterson
Team member