Wheelchair Accessable Vehicle
Donation protected
My name is Jeannie Brown and I am the grandmother to Lena, whom I did adopted in 2009.
Lena was in foster care for about six months and it was a struggle to get her out and get her into my care. I was working full time when I adopted her. My mother would care for her so that I could continue working. Then in 2010, my mother suffered a mini-stroke and could no longer care for Lena. I had to quit my job, as there was no daycare that would take a medically, fragile, disabled child.
Lena has significant health issues. She is missing her corpus callosum (the middle part of her brain that integrates the right and left sides) because she has a cystic lesion in her brain. She has cerebral palsy, microcephaly, swallow/feeding dysfunction, is cortically blind, has severe epilepsy and is believed to have Lennox-Gastaut Syndrome.
Lennox-Gastaut Syndrome is basically catastrophic epilepsy with an underlying brain malformation. What this means is Lena has seizures every day of her life since birth. She is on four anti-seizure medications, has a vagus nerve stimulator (sends an electrical current to the brain every three minutes to interrupt seizures) and is on the ketogenic diet. Even with all of these interventions, she still continues to seize daily. We only have two more medication options that have not been tried. Every time we change something, her seizures come down to about four a day and then they start to rise again. Recently she had 40 seizures in one day. One seizure is very hard on a person's body.
Currently we need to travel from our home in Belgrade, Montana to Aurora, Colorado to visit the Colorado Children's Hospital every three months. I put on approximately 1,600 miles each trip. I may need to start going more frequently.
I used my savings and retirement to pay off my house and buy a cargo van that had been fitted with a wheelchair lift. This was the only type of van I found that I could afford. Wheelchair assessable vehicles are very expensive. A good used one can cost an average of $25,000 and up. A new one can exceed $60,000.
I am having significant issues with the van and lift. In November, 2013 we were locked out of the van for over two hours (the doors would not deploy and lift would not deploy) in -16 degree weather. At least we were at the local hospital when it happened and could stay warm inside. We needed to wait for someone to come fix it. This is just one example of constant problems I am having. The van is having mechanical issues with motor, the front end is having issues and the transmission has issues and I honestly don't know how much longer it will last. I am scared each time I get in the van and need to take a road trip. I'm scared we will be stranded along side the highway in the middle of nowhere (have you been to Wyoming) without access to help.
Without transportation, I will not be able to make the necessary trips to Colorado to get the care my granddaughter needs. Lena cannot get the specialized neurological care she needs in Montana. I do not have a job and I support the two of us on an adoption subsidy of $770 a month. I have been applying for different grants and so far have been unsuccessful in getting a grant for a new/or good used vehicle to meet our needs.
Please, I need your help before my vehicle is down for good and I have no means of getting Lena to her medical appointments in Colorado.
Thank you very much for your time.
Lena was in foster care for about six months and it was a struggle to get her out and get her into my care. I was working full time when I adopted her. My mother would care for her so that I could continue working. Then in 2010, my mother suffered a mini-stroke and could no longer care for Lena. I had to quit my job, as there was no daycare that would take a medically, fragile, disabled child.
Lena has significant health issues. She is missing her corpus callosum (the middle part of her brain that integrates the right and left sides) because she has a cystic lesion in her brain. She has cerebral palsy, microcephaly, swallow/feeding dysfunction, is cortically blind, has severe epilepsy and is believed to have Lennox-Gastaut Syndrome.
Lennox-Gastaut Syndrome is basically catastrophic epilepsy with an underlying brain malformation. What this means is Lena has seizures every day of her life since birth. She is on four anti-seizure medications, has a vagus nerve stimulator (sends an electrical current to the brain every three minutes to interrupt seizures) and is on the ketogenic diet. Even with all of these interventions, she still continues to seize daily. We only have two more medication options that have not been tried. Every time we change something, her seizures come down to about four a day and then they start to rise again. Recently she had 40 seizures in one day. One seizure is very hard on a person's body.
Currently we need to travel from our home in Belgrade, Montana to Aurora, Colorado to visit the Colorado Children's Hospital every three months. I put on approximately 1,600 miles each trip. I may need to start going more frequently.
I used my savings and retirement to pay off my house and buy a cargo van that had been fitted with a wheelchair lift. This was the only type of van I found that I could afford. Wheelchair assessable vehicles are very expensive. A good used one can cost an average of $25,000 and up. A new one can exceed $60,000.
I am having significant issues with the van and lift. In November, 2013 we were locked out of the van for over two hours (the doors would not deploy and lift would not deploy) in -16 degree weather. At least we were at the local hospital when it happened and could stay warm inside. We needed to wait for someone to come fix it. This is just one example of constant problems I am having. The van is having mechanical issues with motor, the front end is having issues and the transmission has issues and I honestly don't know how much longer it will last. I am scared each time I get in the van and need to take a road trip. I'm scared we will be stranded along side the highway in the middle of nowhere (have you been to Wyoming) without access to help.
Without transportation, I will not be able to make the necessary trips to Colorado to get the care my granddaughter needs. Lena cannot get the specialized neurological care she needs in Montana. I do not have a job and I support the two of us on an adoption subsidy of $770 a month. I have been applying for different grants and so far have been unsuccessful in getting a grant for a new/or good used vehicle to meet our needs.
Please, I need your help before my vehicle is down for good and I have no means of getting Lena to her medical appointments in Colorado.
Thank you very much for your time.
Organizer
Jeannie Brown
Organizer
Belgrade, MT