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My name is Carolyn and I am Jon's mom. I would like to introduce you to Jon Russell. PLEASE feel free to share this page with your family and/or friends if you'd like.
Jon is a 33 yr old young man that is facing yet another decline in his health and quality of life. Jon was diagnosed with a brain tumor when he was 8 mos old. He went through chemo and radiation at the age of 3yrs old. The radiation left him with cognitive delays and he functions at a level of 5-6 yr old to this day.
Jon lived a fairly "normal" life until 2007. He had a stroke in Jan. of that year that they contributed to the radiation he had at 3 yrs of age. At that time they told us that he would continue to decline until we lost him. I immediately promised myself that Jon would not spend what time he had left in is bed and/or bedroom. There was LOTS of life yet to live and I vowed to make sure that he got to live it. Jon had a second stroke in June of that same year. Each stroke took a little piece of Jon and a little piece out of life as he knew it. The prediction that he would continue to decline has certainly come to fruition. He had a feeding tube placed in 2008, he became incontinent in that same year, a pacemaker was needed in 2009 and the last time he walked was in 2009 as well (he could stand well enough to get in/out of his bed, wheelchair and/or car but that was it). His kidneys started failing in 2009 and in 2010 he started dialysis. In Dec. of 2011 he had his first seizure and was non responsive for 9 days. Each of those events made it harder for Jon to go out and do things but I stuck to my promise that no matter how hard it got as long as he was able we would go, see and do to make sure he was living not just existing.
This last Dec. (Christmas Eve) Jon was admitted to the hospital and he spent the following almost 4 1/2 mos in a hospital, 10 of those days were in the neuro ICU.
This last bout of illness left Jon in the following condition. He is definitely weaker, he can no longer stand to transfer, he can no longer sit unassisted in his bed or at the side of his bed. Jon no longer being able to stand means he can no longer get in and/or out of our van. We use our local paratransit to get him to where he needs to be. That is very time consuming and we spend LOTS of time waiting for buses. We are VERY GRATEFUL for this service but it has it's limits. This service does not go to the area his brother lives in so we can no longer go to things at his house where a lot of our family events take place. It also means that Jon's ability to go to some of his favorite places like Disneyland, San Diego and the beach have been taken away or limited. I can no longer take him by myself so he can only do those things when his brother (who has a full time job and a family of his own) can go w/us to lift Jon when needed (in/out of bed/wheelchair/car). Jon is a BIG boy...6'3" and 190# so lifting him is NOT easy for anyone.
I started doing research for modified vans and they are way out of our budget (single mom on a fixed income and medical expenses). During my research I found a person lift device that would be installed under the dash in our existing van. This device is approx $5k for the front seat and $6k for the back, which Jon needs. Not sure if that covers installation but believe it does. This type of device is NOT covered by insurance as it is deemed not necessary! This device would make it so I could once again take him to the places he loves and do the things he loves on my own with little or no help. It would also make things in our everyday lives like getting to doctor appts, going to physical therapy, going to dialysis 3 times a week and doing fun things locally that Jon loves so much easier.
(see video below)
If our current van ever needed to be sold it could also be uninstalled (leaving the van normal and no sign of the lift device) and then reinstalled in a van if a new one was ever needed. This would eliminate the expense of another expensive modified van. Long road trips are now not an option but with a way to get him in our van he can still take close little trips and get around our town just like he was used to. When I asked him what he wants to do most he said..."go to Disneyland, but, what I really want is to go through a drive thru on the way home from dialysis like we used to". That is just one of what he sees as life's little pleasures that he can no longer do. While we struggle to get used to yet another "new normal" helping me get this device will help Jon live life like he was before this last event. I feel that I have done a pretty good job at helping Jon experience/enjoy life in the last 8 yrs but without this device I am afraid that will come to an end. Even the smallest of donation will help Jon do that. Thank you!
Jon is a 33 yr old young man that is facing yet another decline in his health and quality of life. Jon was diagnosed with a brain tumor when he was 8 mos old. He went through chemo and radiation at the age of 3yrs old. The radiation left him with cognitive delays and he functions at a level of 5-6 yr old to this day.
Jon lived a fairly "normal" life until 2007. He had a stroke in Jan. of that year that they contributed to the radiation he had at 3 yrs of age. At that time they told us that he would continue to decline until we lost him. I immediately promised myself that Jon would not spend what time he had left in is bed and/or bedroom. There was LOTS of life yet to live and I vowed to make sure that he got to live it. Jon had a second stroke in June of that same year. Each stroke took a little piece of Jon and a little piece out of life as he knew it. The prediction that he would continue to decline has certainly come to fruition. He had a feeding tube placed in 2008, he became incontinent in that same year, a pacemaker was needed in 2009 and the last time he walked was in 2009 as well (he could stand well enough to get in/out of his bed, wheelchair and/or car but that was it). His kidneys started failing in 2009 and in 2010 he started dialysis. In Dec. of 2011 he had his first seizure and was non responsive for 9 days. Each of those events made it harder for Jon to go out and do things but I stuck to my promise that no matter how hard it got as long as he was able we would go, see and do to make sure he was living not just existing.
This last Dec. (Christmas Eve) Jon was admitted to the hospital and he spent the following almost 4 1/2 mos in a hospital, 10 of those days were in the neuro ICU.
This last bout of illness left Jon in the following condition. He is definitely weaker, he can no longer stand to transfer, he can no longer sit unassisted in his bed or at the side of his bed. Jon no longer being able to stand means he can no longer get in and/or out of our van. We use our local paratransit to get him to where he needs to be. That is very time consuming and we spend LOTS of time waiting for buses. We are VERY GRATEFUL for this service but it has it's limits. This service does not go to the area his brother lives in so we can no longer go to things at his house where a lot of our family events take place. It also means that Jon's ability to go to some of his favorite places like Disneyland, San Diego and the beach have been taken away or limited. I can no longer take him by myself so he can only do those things when his brother (who has a full time job and a family of his own) can go w/us to lift Jon when needed (in/out of bed/wheelchair/car). Jon is a BIG boy...6'3" and 190# so lifting him is NOT easy for anyone.
I started doing research for modified vans and they are way out of our budget (single mom on a fixed income and medical expenses). During my research I found a person lift device that would be installed under the dash in our existing van. This device is approx $5k for the front seat and $6k for the back, which Jon needs. Not sure if that covers installation but believe it does. This type of device is NOT covered by insurance as it is deemed not necessary! This device would make it so I could once again take him to the places he loves and do the things he loves on my own with little or no help. It would also make things in our everyday lives like getting to doctor appts, going to physical therapy, going to dialysis 3 times a week and doing fun things locally that Jon loves so much easier.
(see video below)
If our current van ever needed to be sold it could also be uninstalled (leaving the van normal and no sign of the lift device) and then reinstalled in a van if a new one was ever needed. This would eliminate the expense of another expensive modified van. Long road trips are now not an option but with a way to get him in our van he can still take close little trips and get around our town just like he was used to. When I asked him what he wants to do most he said..."go to Disneyland, but, what I really want is to go through a drive thru on the way home from dialysis like we used to". That is just one of what he sees as life's little pleasures that he can no longer do. While we struggle to get used to yet another "new normal" helping me get this device will help Jon live life like he was before this last event. I feel that I have done a pretty good job at helping Jon experience/enjoy life in the last 8 yrs but without this device I am afraid that will come to an end. Even the smallest of donation will help Jon do that. Thank you!