Help Small Family Pay Medical Bills & Stay in Home
Donation protected
Introduction
My wife, Reiko, was diagnosed with Multiple Sclerosis (MS) just over 20 years ago but the last five years have been the worst, by far. Every day she suffers chronic fatigue, painful spasticity, and many other symptoms. She uses a wheelchair and is losing functionality in both of her hands. Activities of daily life are difficult or impossible without my assistance during the day and at night.
Sleep offers no respite. It is rare when my wife doesn’t need my assistance at least once during the night. Laying down after sitting in a wheelchair all day brings on the worst of spasticity and cramping, strange neurological sensations and pains, and many more symptoms that rob her of sleep bringing on chronic fatigue earlier and more intensely the next day. Bad nights often string together requiring more care from me during the days. Our worst stretch was six weeks with 2 or 3 interruptions every night. We both could barely function after a couple of weeks.
Since 2012, I have been my wife’s full-time caregiver. In late 2015, Reiko’s neurologist reclassified her MS diagnosis from Relapsing-Remitting to Secondary-Progressive. As her MS progresses, my caregiving responsibilities increase. I receive no income or assistance of any kind for the care I provide. We can’t afford to pay for help so I can’t work outside the home.
In this very difficult and challenging situation we are raising our son Donovan. Now 12, Donovan has seen his mother go from walking with a cane, to using a walker indoors and riding a motorized scooter outdoors, to using a wheelchair all day, everyday. He regularly sees his mom in excruciating pain, racked in spasticity, and a couple of years ago he asked, “Dad, what are we going to do when mom gets so bad you can never leave her side?”
Hope and Support
The last two years have been a blessing and extremely trying.
A blessing because a new FDA approved MS disease modifying therapy (DMT), Ocrevus, has been side-effect free so far. All the other DMTs she’s tried over the last 20 years brought on severe side effects worse than the MS symptoms, or came with a black box warning (that is, people died from the medicine). MS is an autoimmune disease that attacks the myelin sheathing around nerve cells in the brain and central nervous system. The cause of MS is unknown. There is no cure for MS.
Also, since August 2017, Reiko receives twice-weekly outpatient plasmapheresis treatments at UC San Diego. Plasmapheresis lifts her baseline and top-line of functionality and it reduces the pain, suffering, and chronic fatigue. Donovan’s worst-case question was postponed by this new treatment.
Plasmapheresis requires large needles in each arm to draw out her blood to remove her plasma and antibodies in a machine, and return her blood with new plasma. Over time, accessing a blood vessel became torturous, and often required multiple attempts at finding a robust vein. Her doctors recommended surgically implanting a port for the draw to make the twice weekly process easier, less stressful and less painful.
For unknown reasons, the incision didn’t heal well and it reopened making emergency port removal surgery necessary out of concern for infections like sepsis. Less than four months later a different model port was implanted but it too had to come out after the incision site developed a hematoma and subsequently reopened. Plasmapheresis strictly proceeds now through needles.
Both emergency surgeries meant we needed someone to take care of Donovan during Reiko’s surgery and for a few days while I cared for her as she recovered. Fortunately, we have a network of families, teachers and administrators from his school that love and care for him. All we had to do was ask for help and Donovan was picked up from school, provided a place to stay for a couple nights, washed his clothes, etc., while Reiko recovered. Families deliver prepared meals, groceries, medicines, and more when my care responsibilities make it difficult to leave the house.
Financial Ruin from Living with Chronic Illness
MS requires constant accommodation over the course of a lifetime living with the disease. Expenses for durable medical supplies, everyday medical supplies, insurance copays for medicines, treatments, and appointments (now eight to twelve a month), and all the surrounding costs for living with a debilitating, chronic disease have piled up over the years. Despite having health insurance our medical costs continue to rise.
Since 2014, our income is entirely based on Social Security Disability Insurance and a Long Term Disability insurance benefit from Reiko’s last employer. Our income today is 30% of what it was when I last worked full-time in 2011. Every year we run up a debt to cover the gap between income and expenses. Those debts were paid by exhausting our savings and investments, and drawing from retirement accounts.
Now we have debt but nothing left with which to pay. We are not eligible for any other Fed or State assistance for Reiko or for me. Three years ago, we unsuccessfully tried to secure a home equity loan rather than use credit cards. We make too much money to qualify for additional assistance and not enough to secure non-predatory loans.
We currently have over $50,000 of credit card debt. We’re behind on our mortgage and on my ACA health insurance premiums. Last December, I went to the ER under doctor’s orders because of severe left shoulder, neck and arm pain. The concern was a potential heart attack. I checked out fine (anxiety and stress, no doubt!), but we received an ER bill covered by ACA insurance (an in-network hospital) of $6100. We can’t pay it without help.
Now we have no recourse but to ask for your compassion and donations to help us. We are turning to GoFundMe to avoid becoming one of over 500,000 Americans who declare bankruptcy every year because of medical and care costs.
We want to stay in our house. Rents in our city are higher than our mortgage and finding accessible properties is very hard. Please share our GoFundMe campaign to help us reach more people. Thank you for reading our story and thank you for any contribution your are able to provide.
How Your Contributions Will Be Spent
Our fundraising goal is $100,000.
Here’s how your contributions will help.
$15,000 (URGENT: Help Us Stay in our House and Pay Medical Expenses)
- Catching up on home mortgage so we can stay in our home!
- Catching up on Scott’s ACA medical insurance
- Paying the $6100 ER bill
$58,000 (Payoff debt)
- Paying off credit card bills
- Repairs for our only vehicle (a 2007 Honda mini van with 110k+ miles): make driver side window and sliding rear passenger door operable again and 100k maintenance service
$27,000 (Accessibility and Independence Improvements)
- A new wheelchair for Reiko. Current chair has bent frame and is too small. It pulls to one side which requires more effort from Reiko which brings on her chronic fatigue earlier. Or I push.
- Max Mobility Smart Drive . This will provide greater independence for Reiko and reduce her chronic fatigue from manually pushing her wheelchair. Helps reduce the impact of lost hand functionality. Frees me from having to push Reiko so often.
- Recliner chair for Reiko. Sitting in a wheelchair all day leads to painfully swollen feet. Reiko needs to get her feet up to reduce pain and swelling. The recliner will also provide a sleeping option for Reiko when laying flat in bed is too painful and leads to cramping and spasticity in her legs.
- Sara Stedy Sit-to-Stand Lift . I currently physically lift Reiko as needed. This can number from 6 times on a good day to dozens of lifts a day. I’m not getting any younger and lifting 2/3 my body weight with my back leads to back strains and pains, but I still have to lift no matter how my back feels.
- Improve safety and accessibility in bathroom for Reiko. Sinks are at eye-level when sitting in a wheelchair. Transferring in and out of shower currently requires assistance in a less than optimal setup.
- Hire respite care (~$25/hr) so I can schedule medical and dental procedures I've postponed. Maybe a night or two so Donovan and me can go camping again.
My wife, Reiko, was diagnosed with Multiple Sclerosis (MS) just over 20 years ago but the last five years have been the worst, by far. Every day she suffers chronic fatigue, painful spasticity, and many other symptoms. She uses a wheelchair and is losing functionality in both of her hands. Activities of daily life are difficult or impossible without my assistance during the day and at night.
Sleep offers no respite. It is rare when my wife doesn’t need my assistance at least once during the night. Laying down after sitting in a wheelchair all day brings on the worst of spasticity and cramping, strange neurological sensations and pains, and many more symptoms that rob her of sleep bringing on chronic fatigue earlier and more intensely the next day. Bad nights often string together requiring more care from me during the days. Our worst stretch was six weeks with 2 or 3 interruptions every night. We both could barely function after a couple of weeks.
Since 2012, I have been my wife’s full-time caregiver. In late 2015, Reiko’s neurologist reclassified her MS diagnosis from Relapsing-Remitting to Secondary-Progressive. As her MS progresses, my caregiving responsibilities increase. I receive no income or assistance of any kind for the care I provide. We can’t afford to pay for help so I can’t work outside the home.
In this very difficult and challenging situation we are raising our son Donovan. Now 12, Donovan has seen his mother go from walking with a cane, to using a walker indoors and riding a motorized scooter outdoors, to using a wheelchair all day, everyday. He regularly sees his mom in excruciating pain, racked in spasticity, and a couple of years ago he asked, “Dad, what are we going to do when mom gets so bad you can never leave her side?”
Hope and Support
The last two years have been a blessing and extremely trying.
A blessing because a new FDA approved MS disease modifying therapy (DMT), Ocrevus, has been side-effect free so far. All the other DMTs she’s tried over the last 20 years brought on severe side effects worse than the MS symptoms, or came with a black box warning (that is, people died from the medicine). MS is an autoimmune disease that attacks the myelin sheathing around nerve cells in the brain and central nervous system. The cause of MS is unknown. There is no cure for MS.
Also, since August 2017, Reiko receives twice-weekly outpatient plasmapheresis treatments at UC San Diego. Plasmapheresis lifts her baseline and top-line of functionality and it reduces the pain, suffering, and chronic fatigue. Donovan’s worst-case question was postponed by this new treatment.
Plasmapheresis requires large needles in each arm to draw out her blood to remove her plasma and antibodies in a machine, and return her blood with new plasma. Over time, accessing a blood vessel became torturous, and often required multiple attempts at finding a robust vein. Her doctors recommended surgically implanting a port for the draw to make the twice weekly process easier, less stressful and less painful.
For unknown reasons, the incision didn’t heal well and it reopened making emergency port removal surgery necessary out of concern for infections like sepsis. Less than four months later a different model port was implanted but it too had to come out after the incision site developed a hematoma and subsequently reopened. Plasmapheresis strictly proceeds now through needles.
Both emergency surgeries meant we needed someone to take care of Donovan during Reiko’s surgery and for a few days while I cared for her as she recovered. Fortunately, we have a network of families, teachers and administrators from his school that love and care for him. All we had to do was ask for help and Donovan was picked up from school, provided a place to stay for a couple nights, washed his clothes, etc., while Reiko recovered. Families deliver prepared meals, groceries, medicines, and more when my care responsibilities make it difficult to leave the house.
Financial Ruin from Living with Chronic Illness
MS requires constant accommodation over the course of a lifetime living with the disease. Expenses for durable medical supplies, everyday medical supplies, insurance copays for medicines, treatments, and appointments (now eight to twelve a month), and all the surrounding costs for living with a debilitating, chronic disease have piled up over the years. Despite having health insurance our medical costs continue to rise.
Since 2014, our income is entirely based on Social Security Disability Insurance and a Long Term Disability insurance benefit from Reiko’s last employer. Our income today is 30% of what it was when I last worked full-time in 2011. Every year we run up a debt to cover the gap between income and expenses. Those debts were paid by exhausting our savings and investments, and drawing from retirement accounts.
Now we have debt but nothing left with which to pay. We are not eligible for any other Fed or State assistance for Reiko or for me. Three years ago, we unsuccessfully tried to secure a home equity loan rather than use credit cards. We make too much money to qualify for additional assistance and not enough to secure non-predatory loans.
We currently have over $50,000 of credit card debt. We’re behind on our mortgage and on my ACA health insurance premiums. Last December, I went to the ER under doctor’s orders because of severe left shoulder, neck and arm pain. The concern was a potential heart attack. I checked out fine (anxiety and stress, no doubt!), but we received an ER bill covered by ACA insurance (an in-network hospital) of $6100. We can’t pay it without help.
Now we have no recourse but to ask for your compassion and donations to help us. We are turning to GoFundMe to avoid becoming one of over 500,000 Americans who declare bankruptcy every year because of medical and care costs.
We want to stay in our house. Rents in our city are higher than our mortgage and finding accessible properties is very hard. Please share our GoFundMe campaign to help us reach more people. Thank you for reading our story and thank you for any contribution your are able to provide.
How Your Contributions Will Be Spent
Our fundraising goal is $100,000.
Here’s how your contributions will help.
$15,000 (URGENT: Help Us Stay in our House and Pay Medical Expenses)
- Catching up on home mortgage so we can stay in our home!
- Catching up on Scott’s ACA medical insurance
- Paying the $6100 ER bill
$58,000 (Payoff debt)
- Paying off credit card bills
- Repairs for our only vehicle (a 2007 Honda mini van with 110k+ miles): make driver side window and sliding rear passenger door operable again and 100k maintenance service
$27,000 (Accessibility and Independence Improvements)
- A new wheelchair for Reiko. Current chair has bent frame and is too small. It pulls to one side which requires more effort from Reiko which brings on her chronic fatigue earlier. Or I push.
- Max Mobility Smart Drive . This will provide greater independence for Reiko and reduce her chronic fatigue from manually pushing her wheelchair. Helps reduce the impact of lost hand functionality. Frees me from having to push Reiko so often.
- Recliner chair for Reiko. Sitting in a wheelchair all day leads to painfully swollen feet. Reiko needs to get her feet up to reduce pain and swelling. The recliner will also provide a sleeping option for Reiko when laying flat in bed is too painful and leads to cramping and spasticity in her legs.
- Sara Stedy Sit-to-Stand Lift . I currently physically lift Reiko as needed. This can number from 6 times on a good day to dozens of lifts a day. I’m not getting any younger and lifting 2/3 my body weight with my back leads to back strains and pains, but I still have to lift no matter how my back feels.
- Improve safety and accessibility in bathroom for Reiko. Sinks are at eye-level when sitting in a wheelchair. Transferring in and out of shower currently requires assistance in a less than optimal setup.
- Hire respite care (~$25/hr) so I can schedule medical and dental procedures I've postponed. Maybe a night or two so Donovan and me can go camping again.
Organizer
Scott Bryan Morris
Organizer
San Diego, CA
