RJ's Van Fund (wheelchair lift)
Donation protected
I am RJ Kendall and I am a 10 year old boy whom was born with a very rare genetic disorder, EIEE12 (Early Infantile Epileptic Encephalopathy type 12). This is a gene mutation from the PLCB1 gene. I am also the first and only known patient in the entire world with two point mutations in this gene. This disorder has caused multiple things to develop in my life as I have many different daily struggles which require 24/7 hands on care.
With my daily constant care, my Mom is unable to return to work outside of the home and I rely on her for my care and transporting me to all my medical and Doctor apts.
You see, I suffer daily from these very scary, sudden onset drop spells, which can happen at any given moment or time of the day. These spells do not even give my Mom or caregiver any indication of when they can happen and I can collapse on the floor before you know it. Needless to say, you have to be on your toes and on high alert with me at all times. This disorder has also caused me to develop a severe form of epilepsy which can produce those very bad grand mal seizures as well. I also suffer from a form of Autism and I sometimes become frustrated as I am non-verbal but I am learning to use a picture exchange communication system to help me express my wants and needs. I am also unable to walk and require full hands on assistance and the use of a wheelchair. I also use an adaptive walker to help with my mobility needs.
I am still a growing boy and I am becoming much bigger now and will only continue to grow. Unfortunately, however our current van does not have a lift for my wheelchair and it is an older model van which is not allowed to be modified or altered to put a lift in it by a vendor's rules.
Unfortunately, my Mom sometimes has to manually lift me in and out of my wheelchair to place me in my car seat even if its pouring rain outside and she struggles to find help to lift my wheelchair in the van to transport it with us to appointments.
I help assist her as much as my body will allow me to do so to get in my car seat, but when the drop spells or seizures come on I can collapse in an instant and she then struggles moving and lifting me and my heavy body to a safe place.
I am so wanting to be able to do much more to help assist my Mom when I have to be placed into our van for us to go to my appointments but with my disorder and no real muscle strength I can not do so.
But you could help! If you could participate in my Van Fund and make a donation.
If you make a heart filled donation, this will allow for the purhcase of a van especially for me to have an already installed wheelchair ramp and allow my Mom and I the feeling of safety when I'm being wheeled directly onto a van lift. We will not have to worry about me collasping in her arms or on the ground and get hurt. I've ready experienced some very scary situations with my drop spells and seizures.
So please, would you kindly consider donating to RJ's Van Fund?
Thank you!
RJ
With my daily constant care, my Mom is unable to return to work outside of the home and I rely on her for my care and transporting me to all my medical and Doctor apts.
You see, I suffer daily from these very scary, sudden onset drop spells, which can happen at any given moment or time of the day. These spells do not even give my Mom or caregiver any indication of when they can happen and I can collapse on the floor before you know it. Needless to say, you have to be on your toes and on high alert with me at all times. This disorder has also caused me to develop a severe form of epilepsy which can produce those very bad grand mal seizures as well. I also suffer from a form of Autism and I sometimes become frustrated as I am non-verbal but I am learning to use a picture exchange communication system to help me express my wants and needs. I am also unable to walk and require full hands on assistance and the use of a wheelchair. I also use an adaptive walker to help with my mobility needs.
I am still a growing boy and I am becoming much bigger now and will only continue to grow. Unfortunately, however our current van does not have a lift for my wheelchair and it is an older model van which is not allowed to be modified or altered to put a lift in it by a vendor's rules.
Unfortunately, my Mom sometimes has to manually lift me in and out of my wheelchair to place me in my car seat even if its pouring rain outside and she struggles to find help to lift my wheelchair in the van to transport it with us to appointments.
I help assist her as much as my body will allow me to do so to get in my car seat, but when the drop spells or seizures come on I can collapse in an instant and she then struggles moving and lifting me and my heavy body to a safe place.
I am so wanting to be able to do much more to help assist my Mom when I have to be placed into our van for us to go to my appointments but with my disorder and no real muscle strength I can not do so.
But you could help! If you could participate in my Van Fund and make a donation.
If you make a heart filled donation, this will allow for the purhcase of a van especially for me to have an already installed wheelchair ramp and allow my Mom and I the feeling of safety when I'm being wheeled directly onto a van lift. We will not have to worry about me collasping in her arms or on the ground and get hurt. I've ready experienced some very scary situations with my drop spells and seizures.
So please, would you kindly consider donating to RJ's Van Fund?
Thank you!
RJ
Organizer
Theresa Kendall
Organizer
Goose Creek, SC
