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Everly Reese Closner was born on June 7th,2016 and is our oldest of three. She is a sweet, energetic, kind, gentle and inquisitive little girl that fully enjoys being a big sister to her two younger brothers- Ace (2) and Knox (1). Her favorite activities include reading, coloring, swimming, riding her scooter and playing outside on swing sets.
In June 2020 Everly was diagnosed with a severe and acute case of PANDAS/PANS (pediatric autoimmune neuropsychiatric disorder). Extensive diagnostic testing was performed, including bloodwork, urine and stool testing, and MRI imaging of the brain. Because of the rarity of this disease, the testing is not covered by insurance and has cost thousands of dollars.
What is PANDAS/PANS
PANDAS/PANS is a life-altering disorder, with a wide array of physical, psychiatric, and neurological symptoms that affect the patient’s ability to eat, sleep, communicate, manage emotions, play, interact and function as a normal child would. If left untreated, this disease will lead to permanent neurological damage and lasting intellectual and developmental delays that will affect the patient for the remainder of her life. Fortunately, if caught and treated early, many of these patients can make a full recovery. However, because the information and research on these types of disorders is in its infancy, many of the diagnostic tests and treatments required for these patients are not yet covered by most insurances. This puts many families in an extremely difficult financial situation as they move along in the treatment process, adding to the stress they are already experiencing because of their child’s health and behavioral issues.
Our Story
Everly became very ill around January 2020 and started having neurological disturbances. Overnight she changed and started having OCD symptoms and compulsions, extreme fear, anxiety, rage, urinary issues, even refused to eat or drink because she was afraid. Her drawing and writing skills regressed to that of a 2-year-old. She also started waking multiple times a night screaming, complaining that specific parts of her brain hurt, having hysteric attacks or fears and compulsions to do things at 2AM. For several months, our then 3 and ½ year old was only sleeping 3-4 hours a night.
We went to multiple doctors and neurologists and they all told us she needed depression meds or counseling. As her parents, we knew there was something deeper causing these issues. Our happy, athletic, spunky little girl changed overnight.
In the spring we found a neurologist in San Antonio, Dr. Suzanne Gazda, that specializes in neurological disorders in children. Everly completed extensive blood work (Cunningham Panel, OATS Test, Mycotoxins test), a Neuro-Quant MRI brain scan, and others. After receiving the results, our daughter was diagnosed with PANS.
We also learned through her blood work that Everly tested positive for Borrelia Miyamotoi (Lyme Disease). She has a double mutated MTHFR gene and extremely low IGG and NAC. And her Neuro-Quant MRI showed severe inflammation of her brain and mild atrophy.
Everly’s body has a severely depressed immune system, no means to detoxify itself, and confused antibodies in her bloodstream attacking her brain.
Our Treatment Plan
Our daughter's neurologist said Everly's case is one of the most extreme causes she has seen for her age. Everly is now taking nineteen herbal supplements and three prescribed medications for her little body. We are spending $300 a month on her medications, as well as follow ups every 6 weeks with her PANS Specialist. Everly was also referred to a Lyme disease expert in Marble Falls, TX; our first Zoom appointment is scheduled for late August. Dr. Gazda told us Everly needs to start IVIG (Immune globulin intravenous) for treatment. IVIG is a sterilized solution made from human plasma that contains the antibodies to help her body protect itself against infection from various diseases and “reboot” her immune system. This is used for people with extreme autoimmune disorders and is the end-all treatment for her condition. But it is cost prohibitive without insurance agreeing to cover it.
For months Everly’s neurologist and Laura negotiated back and forth with our insurance provider, which resulted in Everly’s IVIG treatment getting approved and covered at 80%. She will start home infusions in mid-August. We anticipate that treatment to cost around $7,000 over the next six months bringing our total out of pocket expenses to just over $19,000.
Our Goals
We are asking for your support and prayers as we continue to navigate through this tumultuous path. We hope and pray first and foremost for the complete healing of Everly, then wisdom for us, her parents, followed by provision to pay for the expenses of diagnosing and treating this disease. Lastly, we want to raise awareness of this rare disease, bring it into the light and give hope to other families in the same situation.
-Myles & Laura Closner
Resources:
http://pandasnetwork.org
Interview with Everly’s neurologist on the disease:
https://news4sanantonio.com/news/local/pediatric-neurological-illness-becoming-more-common-san-antonio-doctor-says
Here are some short videos of what life with PANS/PANDAS is like: https://www.moleculeralabs.com/watch-20-20-and-nightline-episode-on-pandas/
Documentary of families with a child suffering with PANS/PANDAS and how it is often misdiagnosed:
https://mykidisnotcrazy.com
In June 2020 Everly was diagnosed with a severe and acute case of PANDAS/PANS (pediatric autoimmune neuropsychiatric disorder). Extensive diagnostic testing was performed, including bloodwork, urine and stool testing, and MRI imaging of the brain. Because of the rarity of this disease, the testing is not covered by insurance and has cost thousands of dollars.
What is PANDAS/PANS
PANDAS/PANS is a life-altering disorder, with a wide array of physical, psychiatric, and neurological symptoms that affect the patient’s ability to eat, sleep, communicate, manage emotions, play, interact and function as a normal child would. If left untreated, this disease will lead to permanent neurological damage and lasting intellectual and developmental delays that will affect the patient for the remainder of her life. Fortunately, if caught and treated early, many of these patients can make a full recovery. However, because the information and research on these types of disorders is in its infancy, many of the diagnostic tests and treatments required for these patients are not yet covered by most insurances. This puts many families in an extremely difficult financial situation as they move along in the treatment process, adding to the stress they are already experiencing because of their child’s health and behavioral issues.
Our Story
Everly became very ill around January 2020 and started having neurological disturbances. Overnight she changed and started having OCD symptoms and compulsions, extreme fear, anxiety, rage, urinary issues, even refused to eat or drink because she was afraid. Her drawing and writing skills regressed to that of a 2-year-old. She also started waking multiple times a night screaming, complaining that specific parts of her brain hurt, having hysteric attacks or fears and compulsions to do things at 2AM. For several months, our then 3 and ½ year old was only sleeping 3-4 hours a night.
We went to multiple doctors and neurologists and they all told us she needed depression meds or counseling. As her parents, we knew there was something deeper causing these issues. Our happy, athletic, spunky little girl changed overnight.
In the spring we found a neurologist in San Antonio, Dr. Suzanne Gazda, that specializes in neurological disorders in children. Everly completed extensive blood work (Cunningham Panel, OATS Test, Mycotoxins test), a Neuro-Quant MRI brain scan, and others. After receiving the results, our daughter was diagnosed with PANS.
We also learned through her blood work that Everly tested positive for Borrelia Miyamotoi (Lyme Disease). She has a double mutated MTHFR gene and extremely low IGG and NAC. And her Neuro-Quant MRI showed severe inflammation of her brain and mild atrophy.
Everly’s body has a severely depressed immune system, no means to detoxify itself, and confused antibodies in her bloodstream attacking her brain.
Our Treatment Plan
Our daughter's neurologist said Everly's case is one of the most extreme causes she has seen for her age. Everly is now taking nineteen herbal supplements and three prescribed medications for her little body. We are spending $300 a month on her medications, as well as follow ups every 6 weeks with her PANS Specialist. Everly was also referred to a Lyme disease expert in Marble Falls, TX; our first Zoom appointment is scheduled for late August. Dr. Gazda told us Everly needs to start IVIG (Immune globulin intravenous) for treatment. IVIG is a sterilized solution made from human plasma that contains the antibodies to help her body protect itself against infection from various diseases and “reboot” her immune system. This is used for people with extreme autoimmune disorders and is the end-all treatment for her condition. But it is cost prohibitive without insurance agreeing to cover it.
For months Everly’s neurologist and Laura negotiated back and forth with our insurance provider, which resulted in Everly’s IVIG treatment getting approved and covered at 80%. She will start home infusions in mid-August. We anticipate that treatment to cost around $7,000 over the next six months bringing our total out of pocket expenses to just over $19,000.
Our Goals
We are asking for your support and prayers as we continue to navigate through this tumultuous path. We hope and pray first and foremost for the complete healing of Everly, then wisdom for us, her parents, followed by provision to pay for the expenses of diagnosing and treating this disease. Lastly, we want to raise awareness of this rare disease, bring it into the light and give hope to other families in the same situation.
-Myles & Laura Closner
Resources:
http://pandasnetwork.org
Interview with Everly’s neurologist on the disease:
https://news4sanantonio.com/news/local/pediatric-neurological-illness-becoming-more-common-san-antonio-doctor-says
Here are some short videos of what life with PANS/PANDAS is like: https://www.moleculeralabs.com/watch-20-20-and-nightline-episode-on-pandas/
Documentary of families with a child suffering with PANS/PANDAS and how it is often misdiagnosed:
https://mykidisnotcrazy.com
Organizer and beneficiary
Myles Closner
Beneficiary