Help Alanna Heal! CIRS, POTS, & Lyme
Donation protected
Please pray for the Nevalainens and consider supporting their efforts to help Alanna heal after being diagnosed with CIRS, POTS, and Lyme disease.
How it all began...
Last July(2019), Alanna was visiting her sister out of state when she suddenly became very ill. She felt sudden weakness, shaking, waves of adrenaline, chills, nausea, nearly passing out, and her heart rate stayed around 140bpm even when she was resting. What initially started as a trip to the emergency department has now stretched into a 16 month long struggle of hospitalizations, medical interventions and daily battles.
She has not been able to drive, do daily tasks or leave the house independently. Last fall, after numerous tests and Alanna’s doctors screening her for all sorts of serious problems including muscular disorders and neuroendocrine tumor, she was finally diagnosed with a neurological condition, called Postural Orthostatic Tachycardia Syndrome. POTS is an autonomic condition belonging to the larger group of dysautonomia conditions. Essentially, Alanna’s nervous system does not regulate her body’s heart rate, temperature, blood pressure, or adrenaline as it should.
With this diagnosis, Alanna experiences many symptoms every day and has been learning how to best live with this condition. POTS has no cure and no approved medications. She has seen multiple specialists and has started some therapies that have helped to manage her symptoms. Alanna’s neurologist says that her symptoms are quite more profound than other patient’s and because POTS typically comes as a result of some other illness, he felt it important to identify what might be causing the POTS to affect her so significantly.
Enter the biotoxin/mold investigation...
In looking for the root cause of the POTS, they began working with a functional medicine clinic that specializes in this area. Alanna’s blood work tested positive for a mold/biotoxin-related illness called CIRS. The Chronic Inflammatory Response Syndrome really explains a lot of what her body is going through and includes autoimmune issues. They also found her body is dealing with chronic infections like Lyme disease and Bartonella. This has sparked the need for more doctor appointments, numerous supplements, medications, treatments, house inspections to find any mold or toxins, and multiple remediation projects to the Nevalainen house over the course of the past year.
Alanna’s “mold gene” blood test was positive which means that at this time her body does not identify mold to be targeted for immune system cleansing. The numerous supplements and medications she is tolerating are helping to support her body as well as to detox mold and toxins but are costly.
Expense Breakdown...
In addition to the cost of these supplements and treatments, the functional medicine/mold provider is out-of-network so the Nevalainens have needed to pay out of pocket for all of the medical appointments. These costs will need to continue for the foreseeable future as Alanna tries to heal. They have utilized their saving and emergency funds, and have done a number of other things but the medical and remediation expenses have continued to pile up as they try to get Alanna back on her feet.
While the most crucial remediations have been completed on their home, there are still necessary remediations that need to be completed to prevent this from being an issue again as well as to have a safe place to continue healing. Darin has done as much of the work himself as he can. However, between his normal work at the hospital, taking care of Alanna, the family, and the things she typically does, their time, energy and funds are running quite thin.
Overall, Alanna is doing much better and is much more stable but things can change quickly for her and she has a long way to go.
The Nevalainens haven't been able to share updates much as their lives have been turned upside down with Alanna being so scary sick and doing everything they can to keep their family together. Thank you to many of you who have prayed for, encouraged or helped in different ways over this past year.
Any support you would like to offer through encouragement, prayers, or funds is welcome! They have well over $30,000 in medical and remediation expenses/bills with at least $25,000 in upcoming remediation estimates on top of the monthly ongoing medical expenses. Any funds given will go directly to these needs.
As you all know, Darin and Alanna have also been on a long journey to adopt. For over six years now, they have had the honor of raising their very loved and amazing teenager and have been endlessly advocating to complete his adoption. There have been many challenges and unprecedentedly long wait times but they are hopeful that they are finally nearing the last few months in this important step of obtaining permanency as a family.
Please pray for the Nevalainens and consider helping them through this challenging season!
They really appreciate your prayers, support and encouragement as they do all that they can to help Alanna heal!
Information Video on POTS
CIRS Biotoxin Illness Explained
How it all began...
Last July(2019), Alanna was visiting her sister out of state when she suddenly became very ill. She felt sudden weakness, shaking, waves of adrenaline, chills, nausea, nearly passing out, and her heart rate stayed around 140bpm even when she was resting. What initially started as a trip to the emergency department has now stretched into a 16 month long struggle of hospitalizations, medical interventions and daily battles.
She has not been able to drive, do daily tasks or leave the house independently. Last fall, after numerous tests and Alanna’s doctors screening her for all sorts of serious problems including muscular disorders and neuroendocrine tumor, she was finally diagnosed with a neurological condition, called Postural Orthostatic Tachycardia Syndrome. POTS is an autonomic condition belonging to the larger group of dysautonomia conditions. Essentially, Alanna’s nervous system does not regulate her body’s heart rate, temperature, blood pressure, or adrenaline as it should.
With this diagnosis, Alanna experiences many symptoms every day and has been learning how to best live with this condition. POTS has no cure and no approved medications. She has seen multiple specialists and has started some therapies that have helped to manage her symptoms. Alanna’s neurologist says that her symptoms are quite more profound than other patient’s and because POTS typically comes as a result of some other illness, he felt it important to identify what might be causing the POTS to affect her so significantly.
Enter the biotoxin/mold investigation...
In looking for the root cause of the POTS, they began working with a functional medicine clinic that specializes in this area. Alanna’s blood work tested positive for a mold/biotoxin-related illness called CIRS. The Chronic Inflammatory Response Syndrome really explains a lot of what her body is going through and includes autoimmune issues. They also found her body is dealing with chronic infections like Lyme disease and Bartonella. This has sparked the need for more doctor appointments, numerous supplements, medications, treatments, house inspections to find any mold or toxins, and multiple remediation projects to the Nevalainen house over the course of the past year.
Alanna’s “mold gene” blood test was positive which means that at this time her body does not identify mold to be targeted for immune system cleansing. The numerous supplements and medications she is tolerating are helping to support her body as well as to detox mold and toxins but are costly.
Expense Breakdown...
In addition to the cost of these supplements and treatments, the functional medicine/mold provider is out-of-network so the Nevalainens have needed to pay out of pocket for all of the medical appointments. These costs will need to continue for the foreseeable future as Alanna tries to heal. They have utilized their saving and emergency funds, and have done a number of other things but the medical and remediation expenses have continued to pile up as they try to get Alanna back on her feet.
While the most crucial remediations have been completed on their home, there are still necessary remediations that need to be completed to prevent this from being an issue again as well as to have a safe place to continue healing. Darin has done as much of the work himself as he can. However, between his normal work at the hospital, taking care of Alanna, the family, and the things she typically does, their time, energy and funds are running quite thin.
Overall, Alanna is doing much better and is much more stable but things can change quickly for her and she has a long way to go.
The Nevalainens haven't been able to share updates much as their lives have been turned upside down with Alanna being so scary sick and doing everything they can to keep their family together. Thank you to many of you who have prayed for, encouraged or helped in different ways over this past year.
Any support you would like to offer through encouragement, prayers, or funds is welcome! They have well over $30,000 in medical and remediation expenses/bills with at least $25,000 in upcoming remediation estimates on top of the monthly ongoing medical expenses. Any funds given will go directly to these needs.
As you all know, Darin and Alanna have also been on a long journey to adopt. For over six years now, they have had the honor of raising their very loved and amazing teenager and have been endlessly advocating to complete his adoption. There have been many challenges and unprecedentedly long wait times but they are hopeful that they are finally nearing the last few months in this important step of obtaining permanency as a family.
Please pray for the Nevalainens and consider helping them through this challenging season!
They really appreciate your prayers, support and encouragement as they do all that they can to help Alanna heal!
Information Video on POTS
CIRS Biotoxin Illness Explained
Organizer
Alanna Nevalainen
Organizer
Minneapolis, MN
