Jillayne's Handicap Van
Donation protected
This is Jillayne; the most amazing young woman and the best kid a mom could ever hope for. This page is to humbly ask for help in financing a handicap accessible van for her. Our current van is not driveable and unable to be repaired. This is for Jillayne's independence.
The story of the van: Last Thursday we took our van in to have a new muffler put on. Or so we thought. We got a call from the owner of IMED Mobility saying that it was not the muffler - but the entire underside of the van that holds the conversion in place was about ready to fall off meaning the floor would fall; the van was not safe to drive and he would not let me have it back. He has given us a loaner to use for a couple weeks until we can get a new van.
In a letter he wrote for documentation that we need, he stated:
"IMED Mobility inspected your conversion today and we found a number of issues. One of these could be replaced, the other areas are too far gone to be repaired.
The kneel actuator chain that lowers the van is broken. The B pillar channel on the driver’s side is rusted through and allowing toxic exhaust fumes to enter the cabin of the vehicle. It also appears that the wiring harness that runs through this channel and controls many functions of the conversion is affected. The frame of the conversion on the passenger’s side is so rusted that the van should not be driven any longer. This area is so severe that it could allow the entire floor to buckle while driving. All of these areas are specific to the conversion and are not any part of the van side.
We have to look at two areas, repairing the structural integrity of the van and safety of its continued use. We want you and your daughter to be able to use the van conversion for its intended purpose, but it is not possible at this time. Beyond that, IMED Mobility does not feel that we could rebuild the structure back to a level that we are comfortable with. With the experience that we have in these areas, the only option looks to be to scrap the van."
So that leaves us without transportation. And for Jillayne - that is devastating. Jillayne is 26 years old. She is active and busy. She likes to be out in the community. She has her 4 year degree in Accounting from St. Catherine University and is exploring masters programs for Spring semester. Not having transportation would put her future on hold.
A little bit about Jillayne: Jillayne has Limb Girdle Muscular Dystrophy, Scoliosis and chronic respiratory faiure. She lost the ability to walk when she was 5 and has been in a power chair since that time. She has done special projects for the Bloomington Police and the K9 Unit. She was the Youth Commissioner for the Human Rights Commission for the City of Bloomington. She has been active in Canine Companions for Independence. She graduated from Kennedy High School in 2009. And graduated from St. Catherine University in 2013.
One of Jillayne's specialists said that she is one of the most tenacious people he has ever met. And let me tell you why. In 2009, the night of Jillayne's high school graduation, she came down with the H1N1 virus. She spent 18 weeks at Children's Hospital; 15 of them in ICU. When she was finally released, she was two weeks away from starting college. She was afraid that she would not only lose her scholarships, but also lose the opportunity to attend college at all. She left Children's with a permanent tracheostomy relying on a ventilator to breathe. She also left requiring 24/7 nursing care. But that didn't stop her. She started college two weeks after her discharge, dragging her nurse and emergency bag with her. She finished her four years of college in four years with no J-terms or summer sessions.
In January of 2016, Jillayne went in to the hospital with stomach pain. She ended up having her gall bladder removed. The day before she was supposed to go home, they noticed that she was draining infected fluid. She was taken down and had stents put in the gall bladder and pancreas; that was when she took a turn.
Within a matter of a day, her body was ravaged with infection. Her white count was 31,000. Her fever was 103. She had pneumonia, pseudomonas, sepsis, complete renal failure (went through CRRT and regular dialysis) and suffered a cardiac arrest. For six weeks we lived minute-by-minute and day-by-day. There were several times that the hospital wouldn't let me leave fearing she wasn't going to pull through. But make it she did. The doctor was right - she's a tenacious one.
Jillayne's health has been "okay" since then. She lives with a new normal. And since that six week hospitalization, she has been hospitalized 22 times. She's had 7 trips to the emergency room and 15 hospital admissions. But she keeps her head up; she keeps a positive attitude and she is making plans for the future. This kid doesn't give up.
Just so you know, I will contribute as much as I can as well to the purchase of this van. I would love nothing more than to be able to do this by myself. Asking for help is very hard and demeaning to me. I have been sole support of Jillayne since she was born. I never received a dime of child support when she was growing up; I did it all by myself. But when she got sick and required 24/7 nursing care, I had to give up my career. I was a property manager making a very good salary. But with home health care - as a family member, you are expected to pitch in and help as well as be the back up for when nurses don't show up. That has meant a 60% decrease in earnings. And I'm sure you are wondering why I don't have savings. Well - all of my savings (and inheritance) was used for medical bills for Jillayne when she was younger. I underwent treatment for Stage 3 breast cancer two years ago and never know what tomorrow will bring. So with our every day expenses, and given what I make now, I cannot handle a car payment. Believe me when I say that baring my soul and personal information is extremely difficult for me. But I truly believe that if people are gracious enough to help, they are entitled to the whole story as to why we are asking for help.
I am asking for help for Jillayne. Not for me. I need her to be able to remain as independent and active as possible. I need for her to be able to be out in the community. I need for her to be able to continue with her education. And most important - I need for her to have the opportunity to realize her dreams and goals. If anyone deserves it, she does. She takes on each new day with the only ammunition she has - her spirit, her tenacity, her humor and her grace.
The story of the van: Last Thursday we took our van in to have a new muffler put on. Or so we thought. We got a call from the owner of IMED Mobility saying that it was not the muffler - but the entire underside of the van that holds the conversion in place was about ready to fall off meaning the floor would fall; the van was not safe to drive and he would not let me have it back. He has given us a loaner to use for a couple weeks until we can get a new van.
In a letter he wrote for documentation that we need, he stated:
"IMED Mobility inspected your conversion today and we found a number of issues. One of these could be replaced, the other areas are too far gone to be repaired.
The kneel actuator chain that lowers the van is broken. The B pillar channel on the driver’s side is rusted through and allowing toxic exhaust fumes to enter the cabin of the vehicle. It also appears that the wiring harness that runs through this channel and controls many functions of the conversion is affected. The frame of the conversion on the passenger’s side is so rusted that the van should not be driven any longer. This area is so severe that it could allow the entire floor to buckle while driving. All of these areas are specific to the conversion and are not any part of the van side.
We have to look at two areas, repairing the structural integrity of the van and safety of its continued use. We want you and your daughter to be able to use the van conversion for its intended purpose, but it is not possible at this time. Beyond that, IMED Mobility does not feel that we could rebuild the structure back to a level that we are comfortable with. With the experience that we have in these areas, the only option looks to be to scrap the van."
So that leaves us without transportation. And for Jillayne - that is devastating. Jillayne is 26 years old. She is active and busy. She likes to be out in the community. She has her 4 year degree in Accounting from St. Catherine University and is exploring masters programs for Spring semester. Not having transportation would put her future on hold.
A little bit about Jillayne: Jillayne has Limb Girdle Muscular Dystrophy, Scoliosis and chronic respiratory faiure. She lost the ability to walk when she was 5 and has been in a power chair since that time. She has done special projects for the Bloomington Police and the K9 Unit. She was the Youth Commissioner for the Human Rights Commission for the City of Bloomington. She has been active in Canine Companions for Independence. She graduated from Kennedy High School in 2009. And graduated from St. Catherine University in 2013.
One of Jillayne's specialists said that she is one of the most tenacious people he has ever met. And let me tell you why. In 2009, the night of Jillayne's high school graduation, she came down with the H1N1 virus. She spent 18 weeks at Children's Hospital; 15 of them in ICU. When she was finally released, she was two weeks away from starting college. She was afraid that she would not only lose her scholarships, but also lose the opportunity to attend college at all. She left Children's with a permanent tracheostomy relying on a ventilator to breathe. She also left requiring 24/7 nursing care. But that didn't stop her. She started college two weeks after her discharge, dragging her nurse and emergency bag with her. She finished her four years of college in four years with no J-terms or summer sessions.
In January of 2016, Jillayne went in to the hospital with stomach pain. She ended up having her gall bladder removed. The day before she was supposed to go home, they noticed that she was draining infected fluid. She was taken down and had stents put in the gall bladder and pancreas; that was when she took a turn.
Within a matter of a day, her body was ravaged with infection. Her white count was 31,000. Her fever was 103. She had pneumonia, pseudomonas, sepsis, complete renal failure (went through CRRT and regular dialysis) and suffered a cardiac arrest. For six weeks we lived minute-by-minute and day-by-day. There were several times that the hospital wouldn't let me leave fearing she wasn't going to pull through. But make it she did. The doctor was right - she's a tenacious one.
Jillayne's health has been "okay" since then. She lives with a new normal. And since that six week hospitalization, she has been hospitalized 22 times. She's had 7 trips to the emergency room and 15 hospital admissions. But she keeps her head up; she keeps a positive attitude and she is making plans for the future. This kid doesn't give up.
Just so you know, I will contribute as much as I can as well to the purchase of this van. I would love nothing more than to be able to do this by myself. Asking for help is very hard and demeaning to me. I have been sole support of Jillayne since she was born. I never received a dime of child support when she was growing up; I did it all by myself. But when she got sick and required 24/7 nursing care, I had to give up my career. I was a property manager making a very good salary. But with home health care - as a family member, you are expected to pitch in and help as well as be the back up for when nurses don't show up. That has meant a 60% decrease in earnings. And I'm sure you are wondering why I don't have savings. Well - all of my savings (and inheritance) was used for medical bills for Jillayne when she was younger. I underwent treatment for Stage 3 breast cancer two years ago and never know what tomorrow will bring. So with our every day expenses, and given what I make now, I cannot handle a car payment. Believe me when I say that baring my soul and personal information is extremely difficult for me. But I truly believe that if people are gracious enough to help, they are entitled to the whole story as to why we are asking for help.
I am asking for help for Jillayne. Not for me. I need her to be able to remain as independent and active as possible. I need for her to be able to be out in the community. I need for her to be able to continue with her education. And most important - I need for her to have the opportunity to realize her dreams and goals. If anyone deserves it, she does. She takes on each new day with the only ammunition she has - her spirit, her tenacity, her humor and her grace.
Organizer
Debi Beall
Organizer
Minneapolis, MN