Burk/Elmore Assistance Fund
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Holly Burk (Secondary Progressive Multiple Sclerosis) and the Elmore Family Fund:When God’s Challenges Become Too Much to Handle, who will provide Assistance?
Picture this: You are a young woman in your late Twenties that finally meets the man of your dreams. With 5 children between you, you and your new companion start to build a future together. Your compatibility is evident, because you have known each other since you were teenagers and had to go through separate bad relationships before you came back together. It was a fairy tale and should have lived happily ever after...
But then, life got in the way. Before hooking back up with your new companion, the father of your youngest child at the time was stolen from your arms at the age of six months because his father wanted a son without marriage, had enough money to go after him, and you had to settle out of court with no money and little support structure. Then your oldest son (now 12) developed an inherited condition from his father called ODD (Oppositional Defiance Disorder) and Advanced ADD. So severe that he was put into an assistance program in school at the age of seven, it soon became apparent that his younger brother (now 9) developed the same symptoms by the time he was five.
By the time you two had been together for a few years, God blessed you with a child that was yours together. She was the first daughter and everything you could have wanted. You went back to college to get your degree. Your were still young, active, intelligent and strong and had the world by the tail. Even though you were having to deal with the already described challenges, you were making ends meet with your husband’s business and your student loans. The children were a handful but you could handle them. Then, six months after your daughter was born you started having physical problems. You experienced increasing levels of pain in your back and hips, making it increasingly difficult to negotiate hallways between classes or wrestle the children when you were home. At some point, the pain became so severe that you checked into the emergency room at a local hospital.
After a week of tests and evaluations, you received the devastating news: You had advanced stage Multiple Sclerosis (MS), the second most severe form of the disease, Secondary Progressive. The MRI showed 250+ inactive lesions and a cluster of active lesions the size of a ping-pong ball. The disease is incurable. There are no proven remedies for the symptoms – every case is different, no panacea of treatments exists – doctors don’t even know what causes it, they have only identified 17 “Indicators” that might point to the disease, most of which everyone has to one degree or another. Even though it might be years away, an early death is most probable, especially without the proper therapies and medications, of which cost increasing amounts of money. With no insurance at the time, Holly was forced to apply for Social Security Disability and Medicare.
To give you another idea of how severe her condition was, and still is, she was granted full disability and Medicare without any trouble within three months. While that was a good thing at the time, it means that she cannot marry her spouse or earn more money than about $800 per month without losing her payments. She is very little help with the children, cannot do much to help around the house, cannot go back to school, and is now unable to do any meaningful work because of the advanced stage of the condition. She is now confined to a wheelchair, is losing her short-term memory, and most of her hope. She pretty much needs full-time assistance.She gets around $1200 a month from SSN and Medicare assistance. Under Obamacare, the assistance is limited to what is currently approved by the FDA – limiting her remedies to those currently available in the U.S. Some of the most promising therapies for MS patients – those with the best record of success – are currently only available out of country – especially for advanced cases – and they typically cost between $3000 and $5000 per month. Holly has been told that her progression is typical for someone in their late 40s and 50s.
Aaron, on the other hand, is working from home full-time, taking care of the children when they are not is school (except for their toddler, Annabel, who is now four – who he has to take care of 24/7), preparing the meals, cleaning the house, taking care of the yard, buying the groceries (most of the time with a bicycle, since the truck has been broken down for a year), helping the two boys with their homework, etc. , etc., and, of course, being there for Holly whenever she needs help. Aaron’s typical day is 18 to 20 hours long!
He is a self-employed contractor working out of his home in a home office on IT/Internet projects. As you can probably imagine, he is limited in what he can do and still be there for the family during the day, so he is not paid as well as he would be if he had more flexibility. Currently, he nets around $27,000 a year.
After a week long stay at a therapeutic hospital, Jonathan (12 years old) was additionallyu diagnosed with “schizoaffective disorder,” to add to his earlier diagnoses. He now has to take another medication – a controlled substance- and must be transported to the dr. once a month to get a new prescription, as does Holly – to a different doctor and different pharmacy (about 20 miles from home) – for her controlled-substance prescriptions. Aaron has to arrange for borrowed transportation or pay a cab on those days.
The family gets some support from other family members, provide transportation to the grocery and/or pharmacy occasionally. Aaron’s truck needs a new engine or complete rebuild to be useful.
Well, that is the situation and here is what will help make it right:
Some kind of transportation which can carry the entire family including a wheelchair and/or scooter. It needs to be wheelchair accessible, at least for riding.
A scooter for Holly, so that she can walk with the children and be “active” in their lives, particularly to give them a sense of having their mother in their lives.
Some sort of daily assistance for Holly and the children, to give Aaron some kind of relief during the day so that he can concentrate on making a living for the family.
The Daily assistance person can also transport the children to school and after school activities, as right now they have no friends who live within walking distance and rarely leave the house when not at school.
A better place to live – They currently live in La Marque, Texas, where they are paying $1200 a month for their current rental house that is on the verge of being condemned by the city/county – Holly cannot even roll her wheelchair through most of the house because of the buckling hardwood floor and there are an increasing number of other problems that have never been addressed by the landlord. Also, since they currently live more than 20 miles and 30 minutes from any of their family, no one is close enough to provide any of the assistance normally provided by a family network on a regular basis.
A “Therapy Fund” for transportation to and cost of treatment for those advanced therapies only available out of the U.S.
All of this costs money:
Cost of vehicle – $35,000 plus
Scooter and maintenance contract – $10,000
Daily expense money above and beyond normal expenses – $500/month (10 years, $60,000)
Daily assistance – $40,000/year for salary (10 years, $400,000)
Better accommodations – a five bedroom (one for Aaron’s office) house with handicap accommodations that is wheelchair accessible would cost around $2000 per month or more, or around $25,000 per year (10 years, $250,000) Alternatively, purchasing the same home would cost $333,000 or more.
Therapy Fund - $40,000 per year (10 years, $400,000)
The total aggregate would be $1,155,00, however, if the money is invested in order to maximize the returns over ten years, the total could be as low as $600,000 and still produce the same result.
I hope that you can find it in your hearts to help us with this fund. This family has been challenged with incredible obstacles for the present that would cripple many people, yet their fortitude and resilience under this assault has helped make them determined to survive, no matter what, and your kind monetary assistance – along with God’s intervention – will make it possible to continue as a family long into the future.
Picture this: You are a young woman in your late Twenties that finally meets the man of your dreams. With 5 children between you, you and your new companion start to build a future together. Your compatibility is evident, because you have known each other since you were teenagers and had to go through separate bad relationships before you came back together. It was a fairy tale and should have lived happily ever after...
But then, life got in the way. Before hooking back up with your new companion, the father of your youngest child at the time was stolen from your arms at the age of six months because his father wanted a son without marriage, had enough money to go after him, and you had to settle out of court with no money and little support structure. Then your oldest son (now 12) developed an inherited condition from his father called ODD (Oppositional Defiance Disorder) and Advanced ADD. So severe that he was put into an assistance program in school at the age of seven, it soon became apparent that his younger brother (now 9) developed the same symptoms by the time he was five.
By the time you two had been together for a few years, God blessed you with a child that was yours together. She was the first daughter and everything you could have wanted. You went back to college to get your degree. Your were still young, active, intelligent and strong and had the world by the tail. Even though you were having to deal with the already described challenges, you were making ends meet with your husband’s business and your student loans. The children were a handful but you could handle them. Then, six months after your daughter was born you started having physical problems. You experienced increasing levels of pain in your back and hips, making it increasingly difficult to negotiate hallways between classes or wrestle the children when you were home. At some point, the pain became so severe that you checked into the emergency room at a local hospital.
After a week of tests and evaluations, you received the devastating news: You had advanced stage Multiple Sclerosis (MS), the second most severe form of the disease, Secondary Progressive. The MRI showed 250+ inactive lesions and a cluster of active lesions the size of a ping-pong ball. The disease is incurable. There are no proven remedies for the symptoms – every case is different, no panacea of treatments exists – doctors don’t even know what causes it, they have only identified 17 “Indicators” that might point to the disease, most of which everyone has to one degree or another. Even though it might be years away, an early death is most probable, especially without the proper therapies and medications, of which cost increasing amounts of money. With no insurance at the time, Holly was forced to apply for Social Security Disability and Medicare.
To give you another idea of how severe her condition was, and still is, she was granted full disability and Medicare without any trouble within three months. While that was a good thing at the time, it means that she cannot marry her spouse or earn more money than about $800 per month without losing her payments. She is very little help with the children, cannot do much to help around the house, cannot go back to school, and is now unable to do any meaningful work because of the advanced stage of the condition. She is now confined to a wheelchair, is losing her short-term memory, and most of her hope. She pretty much needs full-time assistance.She gets around $1200 a month from SSN and Medicare assistance. Under Obamacare, the assistance is limited to what is currently approved by the FDA – limiting her remedies to those currently available in the U.S. Some of the most promising therapies for MS patients – those with the best record of success – are currently only available out of country – especially for advanced cases – and they typically cost between $3000 and $5000 per month. Holly has been told that her progression is typical for someone in their late 40s and 50s.
Aaron, on the other hand, is working from home full-time, taking care of the children when they are not is school (except for their toddler, Annabel, who is now four – who he has to take care of 24/7), preparing the meals, cleaning the house, taking care of the yard, buying the groceries (most of the time with a bicycle, since the truck has been broken down for a year), helping the two boys with their homework, etc. , etc., and, of course, being there for Holly whenever she needs help. Aaron’s typical day is 18 to 20 hours long!
He is a self-employed contractor working out of his home in a home office on IT/Internet projects. As you can probably imagine, he is limited in what he can do and still be there for the family during the day, so he is not paid as well as he would be if he had more flexibility. Currently, he nets around $27,000 a year.
After a week long stay at a therapeutic hospital, Jonathan (12 years old) was additionallyu diagnosed with “schizoaffective disorder,” to add to his earlier diagnoses. He now has to take another medication – a controlled substance- and must be transported to the dr. once a month to get a new prescription, as does Holly – to a different doctor and different pharmacy (about 20 miles from home) – for her controlled-substance prescriptions. Aaron has to arrange for borrowed transportation or pay a cab on those days.
The family gets some support from other family members, provide transportation to the grocery and/or pharmacy occasionally. Aaron’s truck needs a new engine or complete rebuild to be useful.
Well, that is the situation and here is what will help make it right:
Some kind of transportation which can carry the entire family including a wheelchair and/or scooter. It needs to be wheelchair accessible, at least for riding.
A scooter for Holly, so that she can walk with the children and be “active” in their lives, particularly to give them a sense of having their mother in their lives.
Some sort of daily assistance for Holly and the children, to give Aaron some kind of relief during the day so that he can concentrate on making a living for the family.
The Daily assistance person can also transport the children to school and after school activities, as right now they have no friends who live within walking distance and rarely leave the house when not at school.
A better place to live – They currently live in La Marque, Texas, where they are paying $1200 a month for their current rental house that is on the verge of being condemned by the city/county – Holly cannot even roll her wheelchair through most of the house because of the buckling hardwood floor and there are an increasing number of other problems that have never been addressed by the landlord. Also, since they currently live more than 20 miles and 30 minutes from any of their family, no one is close enough to provide any of the assistance normally provided by a family network on a regular basis.
A “Therapy Fund” for transportation to and cost of treatment for those advanced therapies only available out of the U.S.
All of this costs money:
Cost of vehicle – $35,000 plus
Scooter and maintenance contract – $10,000
Daily expense money above and beyond normal expenses – $500/month (10 years, $60,000)
Daily assistance – $40,000/year for salary (10 years, $400,000)
Better accommodations – a five bedroom (one for Aaron’s office) house with handicap accommodations that is wheelchair accessible would cost around $2000 per month or more, or around $25,000 per year (10 years, $250,000) Alternatively, purchasing the same home would cost $333,000 or more.
Therapy Fund - $40,000 per year (10 years, $400,000)
The total aggregate would be $1,155,00, however, if the money is invested in order to maximize the returns over ten years, the total could be as low as $600,000 and still produce the same result.
I hope that you can find it in your hearts to help us with this fund. This family has been challenged with incredible obstacles for the present that would cripple many people, yet their fortitude and resilience under this assault has helped make them determined to survive, no matter what, and your kind monetary assistance – along with God’s intervention – will make it possible to continue as a family long into the future.
Organizer
Aaron Elmore
Organizer
La Marque, TX
