Let's Keep Jamie Mobile!
Donation protected
For over a decade now, Jamie Erwin has been battling a rare autoimmune disorder called Devic's disease. There are only a few thousand known cases of the disease in the US and there is no cure as of yet. The impacts of it are devistating as it affects the central nervous system resulting in paralysis and blindness.
Fortunately, Jamie has maintained his vision. Unfortunately, he has slowly lost all motor control, resulting in him being confined to a wheelchair for the last few years.
Nevertheless, Jamie and his family have maintained a positive attitude through all of the trials that have come with his condition. Jamie's father, Tim, undertook the work to make Jamie's previous home handicap-accessible with his own two hands. When Jamie's condition worsened and he needed to stay with his parents, Tim then did what was needed to make his own home handicap-accessible. Jamie's mother, Lillian, has been tirelessly navigating the complex web of paperwork that is needed to work within our healthcare system whether it be insurance claims or Medicare. As for Jamie, rather than lamenting his condition, he has focused on enjoying the moments he has to interact with family and friends.
The daily activities we take for granted like showering, eating, or simply getting out of bed are massive undertakings for Jamie and his family. He now needs around-the-clock care so Lillian has been providing that on a full-time basis with Tim providing care after work and on the weekends. Even with that support, his family has needed to hire aides to assist for two hours a day / six days a week to help with the tasks that they can't do by themselves. All of this is paid for out-of-pocket.
Jamie and his family
A major part of what keeps Jamie's attitude positive is the ability to experience the world outside the four walls of the room in his parents' home. He has two tools that aid in that effort: his wheelchair and his family's wheelchair-accessible van. Sadly, as of late, neither of the two are able to meet his needs.
The wheelchair that he has been using for the past few years was great when he had use of his upper-body but it can no longer provide the support he needs to have any semblance of a normal life. It operates on hand controls, which he can no longer use and does not provide the upper-body or neck support that he now requires in order maintain a position that allows him to breath normally.
Advancements in technology have allowed for the use of wheelchairs that can support the upper body and neck. These chairs also provide the capability to operate them by sipping or puffing into a tube that is connected to the electronics on the chair.
An example of a wheelchair that uses the sip-and-puff technology
Jamie has already demonstrated that he can operate a chair in this way, since it was needed as part of the qualification process to get the new chair. However, all of this comes at a steep price. The good news is that our Medicare system is designed to meet the needs of people like Jamie as the technology develops. The problem is that availability to these resources can often occur on a timescale that doesn't match up with some who is coping with a degenerative disease like Jamie's. His family applied to Medicare to receive a new wheelchair in April of 2015 and have yet to receive one. They have received assurances from Medicare that it is in the works, but every day that he has to wait for a new wheelchair is a day that he is forced to sit in pain with minimal capacity to breath.
Jamie's cousin took him to a Yankees game when he was able to operate his current wheelchair
The wheelchair-accessible van that Jamie's family uses to transport him is his other gateway to the outside world. The van that they currently have was kindly provided by a family friend whose father died of ALS. However, it is aging and has its share of problems. In the process of transporting Jamie from his previous home in Delaware to his parent's home in Connecticut, the engine caught fire. Fortunately, Jamie and his family were not injured but the event has them concerned with taking the van on anything other than very short trips. More importantly, the current van is not designed to support a wheelchair of the size that Jamie requires since he has lost all motor-control.
Wheelchair-accessable vans are extremely expensive and are not covered by Medicare. A used van runs about $30,000. A new rear-entry van with a hydraulic lift can cost as much as $80,000!
Our $45,000 funding goal is intended to keep Jamie mobile. In the event that Medicare does not come through with coverage for Jamie's wheelchair, the funds will be used to pay for such a wheelchair at retail cost. We don't know what exact retail cost would be but it could be as high as $45,000. Even if Medicare does provide coverage, there will likely be a portion of the wheelchair cost that Jamie's family will need to pay. In that case. a portion of these funds would be used to pay these costs. In the event that there are funds remaining after paying for the wheelchair, the remaining amount would be used to purchase a wheelchair-accessable van.
Jamie doesn't need your pity. In fact, since he's had the disease, I've never heard him utter the words "why me?" He's been rolling with the punches for ten years and has kept a positive attitude throughout his battle but, now, he needs our help.
Here's how you can help:
1. Support Jamie's family in the quest to keep Jamie mobile! Maybe you already know Jamie's story and didn't know how to help... here's your chance! Or maybe you just want to be a part of an effort that brings a world of happiness to someone that brings a smile to everyone he comes in contact with. No donation is too small.
If you prefer to make an off-line donation, feel free to contact Jeff to arrange for it by clicking the email icon below the big orange 'Donate Now' button on this page. Any funds received off-line will be reflected in our gofundme campaign total.
2. Share Jamie's story with your friends, family members, and coworkers. Together, we'll make this happen!
In addition to sharing the link for this funding campaign, below is a link to a Facebook post describing Jamie's family's difficulties in getting a wheelchair through Medicare to suit his needs. We are asking that you 'like' and share the post in the hope that someone who can help to move the process along will see it.
https://www.facebook.com/jeffrey.kirk1/posts/10153765594352236:0
For more information about Devic's disease, visit http://www.devic.org.uk/
Fortunately, Jamie has maintained his vision. Unfortunately, he has slowly lost all motor control, resulting in him being confined to a wheelchair for the last few years.
Nevertheless, Jamie and his family have maintained a positive attitude through all of the trials that have come with his condition. Jamie's father, Tim, undertook the work to make Jamie's previous home handicap-accessible with his own two hands. When Jamie's condition worsened and he needed to stay with his parents, Tim then did what was needed to make his own home handicap-accessible. Jamie's mother, Lillian, has been tirelessly navigating the complex web of paperwork that is needed to work within our healthcare system whether it be insurance claims or Medicare. As for Jamie, rather than lamenting his condition, he has focused on enjoying the moments he has to interact with family and friends.
The daily activities we take for granted like showering, eating, or simply getting out of bed are massive undertakings for Jamie and his family. He now needs around-the-clock care so Lillian has been providing that on a full-time basis with Tim providing care after work and on the weekends. Even with that support, his family has needed to hire aides to assist for two hours a day / six days a week to help with the tasks that they can't do by themselves. All of this is paid for out-of-pocket.
Jamie and his familyA major part of what keeps Jamie's attitude positive is the ability to experience the world outside the four walls of the room in his parents' home. He has two tools that aid in that effort: his wheelchair and his family's wheelchair-accessible van. Sadly, as of late, neither of the two are able to meet his needs.
The wheelchair that he has been using for the past few years was great when he had use of his upper-body but it can no longer provide the support he needs to have any semblance of a normal life. It operates on hand controls, which he can no longer use and does not provide the upper-body or neck support that he now requires in order maintain a position that allows him to breath normally.
Advancements in technology have allowed for the use of wheelchairs that can support the upper body and neck. These chairs also provide the capability to operate them by sipping or puffing into a tube that is connected to the electronics on the chair.
An example of a wheelchair that uses the sip-and-puff technologyJamie has already demonstrated that he can operate a chair in this way, since it was needed as part of the qualification process to get the new chair. However, all of this comes at a steep price. The good news is that our Medicare system is designed to meet the needs of people like Jamie as the technology develops. The problem is that availability to these resources can often occur on a timescale that doesn't match up with some who is coping with a degenerative disease like Jamie's. His family applied to Medicare to receive a new wheelchair in April of 2015 and have yet to receive one. They have received assurances from Medicare that it is in the works, but every day that he has to wait for a new wheelchair is a day that he is forced to sit in pain with minimal capacity to breath.
Jamie's cousin took him to a Yankees game when he was able to operate his current wheelchairThe wheelchair-accessible van that Jamie's family uses to transport him is his other gateway to the outside world. The van that they currently have was kindly provided by a family friend whose father died of ALS. However, it is aging and has its share of problems. In the process of transporting Jamie from his previous home in Delaware to his parent's home in Connecticut, the engine caught fire. Fortunately, Jamie and his family were not injured but the event has them concerned with taking the van on anything other than very short trips. More importantly, the current van is not designed to support a wheelchair of the size that Jamie requires since he has lost all motor-control.
Wheelchair-accessable vans are extremely expensive and are not covered by Medicare. A used van runs about $30,000. A new rear-entry van with a hydraulic lift can cost as much as $80,000!
Our $45,000 funding goal is intended to keep Jamie mobile. In the event that Medicare does not come through with coverage for Jamie's wheelchair, the funds will be used to pay for such a wheelchair at retail cost. We don't know what exact retail cost would be but it could be as high as $45,000. Even if Medicare does provide coverage, there will likely be a portion of the wheelchair cost that Jamie's family will need to pay. In that case. a portion of these funds would be used to pay these costs. In the event that there are funds remaining after paying for the wheelchair, the remaining amount would be used to purchase a wheelchair-accessable van.
Jamie doesn't need your pity. In fact, since he's had the disease, I've never heard him utter the words "why me?" He's been rolling with the punches for ten years and has kept a positive attitude throughout his battle but, now, he needs our help.
Here's how you can help:
1. Support Jamie's family in the quest to keep Jamie mobile! Maybe you already know Jamie's story and didn't know how to help... here's your chance! Or maybe you just want to be a part of an effort that brings a world of happiness to someone that brings a smile to everyone he comes in contact with. No donation is too small.
If you prefer to make an off-line donation, feel free to contact Jeff to arrange for it by clicking the email icon below the big orange 'Donate Now' button on this page. Any funds received off-line will be reflected in our gofundme campaign total.
2. Share Jamie's story with your friends, family members, and coworkers. Together, we'll make this happen!
In addition to sharing the link for this funding campaign, below is a link to a Facebook post describing Jamie's family's difficulties in getting a wheelchair through Medicare to suit his needs. We are asking that you 'like' and share the post in the hope that someone who can help to move the process along will see it.
https://www.facebook.com/jeffrey.kirk1/posts/10153765594352236:0
For more information about Devic's disease, visit http://www.devic.org.uk/
Organizer and beneficiary
Jeffrey Robert Kirk
Organizer
Redding, CT
Lillian Erwin
Beneficiary