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Summary
In October of 2018, our son Matthew was diagnosed with an extremely rare and serious condition called Acute Flaccid Myelitis, or AFM. He went from being an active and healthy 3 year old boy to becoming paralyzed and fighting for his life in less than 48 hours of being admitted to the ER.
The past two years have been challenging. We have traveled all around the country to see specialists, have surgeries and specialized therapy. Our hope is simple. Bring Matthew home. For those of you who have been following us on Matthew’s journey of recovery from AFM thus far, Matthew is currently in the pediatric spinal cord injury neurorecovery program at the Frazier Rehabilitation Institute UoL.
How will your gift be used?
*Electrical Stim Medical Device for home use
*Travel expenses/Transporting vehicles across country
*Storage or moving expenses
*Out of pocket Therapy costs/Durable Medical Equipment
Details
We have been in Louisville, KY since January of this year and are far away from home in Los Angeles, CA. It was our plan for Matthew to do an intensive 3 month rehabilitation program and then return home. What we could have never imagined in our wildest imagination was a global pandemic that has forever changed the world. With the rises in cases throughout the US and mandatory Safer at Home orders, we decided that travelling across the country with a medically fragile child was not a wise decision. On a far more positive note, Matthew has been doing extremely well at Frazier and we have seen him make small, but meaningful gains.
When Matthew first got sick, we spent our Christmas at the Kennedy Krieger Institute in Baltimore. Though we had the most wonderful roommates we could ask for and a caring staff that tried to make the holidays as festive as can be given the circumstances, we were lonely and homesick. Bitter cold winters and having our loved ones far away was difficult. It is our sincerest wish that even though we are amidst a global pandemic, we can spend the holidays in our own home, sleeping in our own beds and seeing our loved ones that we haven’t seen for almost a year now. Matthew often laments how he misses “home home” and so do we. We miss the familiar. We miss our friends, church and family.
How are the funds raised in this campaign going to be used? How will this bring Matthew home?
We wish that going home was as simple as packing some belongings and booking a flight. Unfortunately, the situation is more complex than that. Below is a breakdown of what your donation will help with:
*Purchase of a Neubie E-Stim Therapy Device
*Travel expenses/Transporting vehicles across country
*Storage or moving expenses
*Out of pocket Therapy costs/Other Durable Medical Equipment
Purchase of Neubie E-Stim Therapy Device
E-Stim is classified as experimental by insurance and therefore, it is not covered. Some families have been successful with an appeal, but this process can take months, even years. Unfortunately, time is not our ally. One of the reasons we have remained in Kentucky is that there are NO therapy centers back home in Los Angeles that specialize or treat pediatric spinal cord injuries. The therapy center we were attending is wonderful, but does not have the expertise or equipment to treat pediatric spinal cord injuries and to add insult to injury, is not in network with our insurance, every session would be an out of pocket expense. We had been doing research on the Neubie, but as fate would have it, another family in our AFM parent group has used the Neubie with some astonishing results. We are not saying that this device is the panacea. Or a substitute for therapy. However, having this device at home will give us the ability to perform meaningful therapy in the absence of specialized physical therapy for spinal cord injuries. The current program we are in is difficult to get into, as spots are very limited. We simply do not know when Matthew will be eligible again.
Treatment options for AFM and spinal cord injuries are limited. It is our mission to find therapy modalities that can improve the quality of life for not only for Matthew, but for the millions of children and adults who are affected by spinal cord injuries. We have to be completely honest in that we do not know what the future holds. The only thing we know is that this device has tremendous potential and our experience and feedback may open doors for other families. We hope that any improvements we see with Matthew can be a catalyst for research at facilities like Frazier and Kennedy Krieger.
Cost: $15,000.00
Travel expenses/Transporting vehicles across country
In January, I had driven across the country (before COVID-19) while Matthew and Frances flew. I had flown home in March for work, then drove again across the country with our dog Max in April. Our plan is to have Matthew and Frances fly home and I will drive one of the cars back home to Los Angeles with Max. We had considered driving together, but at this juncture, it is a 30+ hour drive and we want to minimize Matthew’s exposure. We had previously obtained quotes to transport of vehicles and the cost ranged from $900-$1500 one way. We will need to ship one of our vehicles home.
Breakdown:
*Plane ticket for Matthew
*Plane ticket for Frances
*Plane ticket for possible second driver to Louisville
*Transport vehicle #2 via a carrier across country
*Gas, Hotel, Food for cross country drive + 2nd driver
Cost: TBD
Storage/Moving Expenses
Option 1: Rent storage unit in Louisville for items that we cannot pack in the car, with the idea of returning
Option 2: Renting a trailer for a 3-4 day, 2100 mile trip. This is questionable in terms of safety in driving and parking overnight
Option 3: Rent a storage POD, pack and then have it shipped to our home in Los Angeles
Cost: TBD
Out of Pocket Therapy
There are no pediatric spinal cord injury programs in Los Angeles. Matthew was previously going to the NAPA Center in El Segundo, but is not specialized in treating children with spinal cord injuries. NAPA is not considered In Network by my health insurance company, and thus we would have to pay for all therapy visits out of pocket. The only known treatment for Acute Flaccid Myelitis is hundreds of hours of intense physical and occupational therapy. Therapy will continue to be a crucial part of Matthew’s continued recovery even if we have a Neubie device.
Other Durable Medical Equipment
We have applied for and was denied by insurance for equipment that will have a huge impact on the quality of Matthew’s life, both short and long term
*Therapy Bench. Matthew uses this in therapy to practice sit to stand exercises and kneeling
*Parallel Walking Bars. Not there yet, but we are working on it! If you know anyone who is handy, it can be built for substantially less out of PVC. If anyone can help, please reach out to us!
Cost: TBD
We know first hand how extremely difficult of a time this has been because of the COVID-19 pandemic. We have been so blessed to have met just over 50% of our goal previously. It is with the utmost humility and gratitude that we are asking for help to get Matthew and the rest of the Park family home for the holidays. Any amount helps. If a financial gift isn’t reasonable at this time, could we please ask you to share using our hashtag #bringmatthome? It truly means the world to us.
#bringmatthome
With Love and Gratitude,
<3 Frances, Mike, Matthew and Max
In October of 2018, our son Matthew was diagnosed with an extremely rare and serious condition called Acute Flaccid Myelitis, or AFM. He went from being an active and healthy 3 year old boy to becoming paralyzed and fighting for his life in less than 48 hours of being admitted to the ER.
The past two years have been challenging. We have traveled all around the country to see specialists, have surgeries and specialized therapy. Our hope is simple. Bring Matthew home. For those of you who have been following us on Matthew’s journey of recovery from AFM thus far, Matthew is currently in the pediatric spinal cord injury neurorecovery program at the Frazier Rehabilitation Institute UoL.
How will your gift be used?
*Electrical Stim Medical Device for home use
*Travel expenses/Transporting vehicles across country
*Storage or moving expenses
*Out of pocket Therapy costs/Durable Medical Equipment
Details
We have been in Louisville, KY since January of this year and are far away from home in Los Angeles, CA. It was our plan for Matthew to do an intensive 3 month rehabilitation program and then return home. What we could have never imagined in our wildest imagination was a global pandemic that has forever changed the world. With the rises in cases throughout the US and mandatory Safer at Home orders, we decided that travelling across the country with a medically fragile child was not a wise decision. On a far more positive note, Matthew has been doing extremely well at Frazier and we have seen him make small, but meaningful gains.
When Matthew first got sick, we spent our Christmas at the Kennedy Krieger Institute in Baltimore. Though we had the most wonderful roommates we could ask for and a caring staff that tried to make the holidays as festive as can be given the circumstances, we were lonely and homesick. Bitter cold winters and having our loved ones far away was difficult. It is our sincerest wish that even though we are amidst a global pandemic, we can spend the holidays in our own home, sleeping in our own beds and seeing our loved ones that we haven’t seen for almost a year now. Matthew often laments how he misses “home home” and so do we. We miss the familiar. We miss our friends, church and family.
How are the funds raised in this campaign going to be used? How will this bring Matthew home?
We wish that going home was as simple as packing some belongings and booking a flight. Unfortunately, the situation is more complex than that. Below is a breakdown of what your donation will help with:
*Purchase of a Neubie E-Stim Therapy Device
*Travel expenses/Transporting vehicles across country
*Storage or moving expenses
*Out of pocket Therapy costs/Other Durable Medical Equipment
Purchase of Neubie E-Stim Therapy Device
E-Stim is classified as experimental by insurance and therefore, it is not covered. Some families have been successful with an appeal, but this process can take months, even years. Unfortunately, time is not our ally. One of the reasons we have remained in Kentucky is that there are NO therapy centers back home in Los Angeles that specialize or treat pediatric spinal cord injuries. The therapy center we were attending is wonderful, but does not have the expertise or equipment to treat pediatric spinal cord injuries and to add insult to injury, is not in network with our insurance, every session would be an out of pocket expense. We had been doing research on the Neubie, but as fate would have it, another family in our AFM parent group has used the Neubie with some astonishing results. We are not saying that this device is the panacea. Or a substitute for therapy. However, having this device at home will give us the ability to perform meaningful therapy in the absence of specialized physical therapy for spinal cord injuries. The current program we are in is difficult to get into, as spots are very limited. We simply do not know when Matthew will be eligible again.
Treatment options for AFM and spinal cord injuries are limited. It is our mission to find therapy modalities that can improve the quality of life for not only for Matthew, but for the millions of children and adults who are affected by spinal cord injuries. We have to be completely honest in that we do not know what the future holds. The only thing we know is that this device has tremendous potential and our experience and feedback may open doors for other families. We hope that any improvements we see with Matthew can be a catalyst for research at facilities like Frazier and Kennedy Krieger.
Cost: $15,000.00
Travel expenses/Transporting vehicles across country
In January, I had driven across the country (before COVID-19) while Matthew and Frances flew. I had flown home in March for work, then drove again across the country with our dog Max in April. Our plan is to have Matthew and Frances fly home and I will drive one of the cars back home to Los Angeles with Max. We had considered driving together, but at this juncture, it is a 30+ hour drive and we want to minimize Matthew’s exposure. We had previously obtained quotes to transport of vehicles and the cost ranged from $900-$1500 one way. We will need to ship one of our vehicles home.
Breakdown:
*Plane ticket for Matthew
*Plane ticket for Frances
*Plane ticket for possible second driver to Louisville
*Transport vehicle #2 via a carrier across country
*Gas, Hotel, Food for cross country drive + 2nd driver
Cost: TBD
Storage/Moving Expenses
Option 1: Rent storage unit in Louisville for items that we cannot pack in the car, with the idea of returning
Option 2: Renting a trailer for a 3-4 day, 2100 mile trip. This is questionable in terms of safety in driving and parking overnight
Option 3: Rent a storage POD, pack and then have it shipped to our home in Los Angeles
Cost: TBD
Out of Pocket Therapy
There are no pediatric spinal cord injury programs in Los Angeles. Matthew was previously going to the NAPA Center in El Segundo, but is not specialized in treating children with spinal cord injuries. NAPA is not considered In Network by my health insurance company, and thus we would have to pay for all therapy visits out of pocket. The only known treatment for Acute Flaccid Myelitis is hundreds of hours of intense physical and occupational therapy. Therapy will continue to be a crucial part of Matthew’s continued recovery even if we have a Neubie device.
Other Durable Medical Equipment
We have applied for and was denied by insurance for equipment that will have a huge impact on the quality of Matthew’s life, both short and long term
*Therapy Bench. Matthew uses this in therapy to practice sit to stand exercises and kneeling
*Parallel Walking Bars. Not there yet, but we are working on it! If you know anyone who is handy, it can be built for substantially less out of PVC. If anyone can help, please reach out to us!
Cost: TBD
We know first hand how extremely difficult of a time this has been because of the COVID-19 pandemic. We have been so blessed to have met just over 50% of our goal previously. It is with the utmost humility and gratitude that we are asking for help to get Matthew and the rest of the Park family home for the holidays. Any amount helps. If a financial gift isn’t reasonable at this time, could we please ask you to share using our hashtag #bringmatthome? It truly means the world to us.
#bringmatthome
With Love and Gratitude,
<3 Frances, Mike, Matthew and Max