Aaron Campbell is 2 years old with SMA type 2:
Aaron Jacob Campbell
P.O. Box 202
East Thetford, VT
RE: Power Wheel Chair Requirements
BACKGROUND: My name is Aaron and I've been diagnosed with spinal muscular atrophy (SMA) Type II. My present maximum gross motor skill is the ability to sit independently, although with difficulty maintaining balance at times. I have fairly good use of my arms and am able to reach above my head, with both hands if supported for balance. I am very smart and learn about things by watching other people. I hate to be shown how to work something, I need to get my hands on it to study it for a minute and can usually figure out how to make it work. My doctor says that SMA doesn't hurt my ability to learn and usually kids with SMA are smarter than normal. Everybody thinks that's the case with me.
My parents have been married for 13 years and are both very active outside (hiking, fishing, hunting and camping). We have a large extended family whom are also very outdoor oriented. Visits are quite frequent. We always have big holiday get togethers at my Grammy's house.
I live in a mobile home at this time. We have a large yard and a very long driveway that I love to explore. My mom has lots of flower gardens, I like to help her dig up weeds and pick the flowers. I get mad a lot because when I want to move to another place I have to get mom to bring me there. She puts me in the stroller to go places but then I get mad because if I drop my toy she has to pick it up every time.
I'm at the age when most kids are exploring on their own. This time in my life is very important to my overall long term development. I need to be able to explore the world to learn how things work. I also need to become independent so as not to think that everything I need has to come from somebody else. I want to grow up and be as independent as possible and live life to the fullest.
GOAL: To obtain a method of power mobility that will also foster my growing need for independence and allow me to develop to my maximum potential in all areas, emotional, cognitive and physical.
CONCERN AREAS: Mobility-Since I can't walk I am not able to move from one activity to another. I need to have a power chair because I am too week to move outside with a manual one. I need to be able to explore and "walk" with mom and dad.
Independence-Since I can move my hands and body good, I have these incredible desires to handle everything I see. I need to have a piece of equipment that will allow me to explore as much of our world as possible. I don't want to just move from one place to another to sit there without the ability to reach anything. I don't want to get mad anymore if I want to pick a flower. I crave the independence that all the other kids my age have started to experience. Family Lifestyle-I need to be able to take place in family activities and stay involved with all the people that I love. This requires being outside on a variety of terrains. I also need to be able to visit and fit into other peoples houses, I need to be able to turn sharp and sit at the table with everybody. Peers-I am almost at the age where other kids get to go to pre-school. I would like to be able to interact with them at their own level and not have to have a teacher pick me up in order to sit on the floor or at the table. I need to start to learn how to use the equipment and practice before that happens. Progressiveness of SMA-Nobody can really be sure how weak I'll get. That makes it especially important for me to get as much help with my development as I can. I need to use all of my potential while I can just in case things get harder later.
SUMMARY OF REQUIRED FEATURES
Power Drive--I am not able to push a chair outside.
Lowering to floor--I need to be able to pick up dropped toys and play on the floor with friends and explore the world. This would be the most important feature in a wheelchair. It would be critical to my developing a sense of independence.
Raising ability-I need to interact with my peers at eye level. I want to be able to wash my hands and eat at the table. I would like to be able to go up and give my daddy a hug. This would be another very important feature to help with my growing need for independence.
All Terrain-I need to be able to go outside on a variety of terrains from lawns to dirt roads. I would like to be able to go on fairly smooth trails. This would allow me to do more things with my family and friends as well as encouraging me to explore our world.
Tight turning-I need to be able to turn around in as small a space as possible. Some places can get cramped and I want to be able to go as many places as possible. This would be beneficial when we visit with relatives. It would also help to keep me from feeling left out.
OUR PREPARATIONS I have used a small homemade chair with push wheels. I have learned to push the wheels to move on the smooth floor. I have trouble controlling it though because one wheel sticks some. When I used a stander with wheels I started to learn to push just one to spin it around. I think that I would be able to learn to use a joystick control pretty easy. I already play with my dads playstation joystick and try to move the stuff on the TV.
My parents have started to get things ready for my power chair. They have gotten a portable ramp to help me get it in and out of the vehicle. It will also help me to get into places that don't have a ramp. My mom is in the process of getting a vehicle that will be able to carry it. She should have it soon. Also my grampy is a carpenter and will change any doors that we need to as well as build ramps. We need to get the chair first though so he knows what needs to be done.
Thank you for spending the time to read this. I realize that it has gotten pretty long, but we are talking about replacing my legs with a piece of equipment that I will be using for the next 5 years of my life. It is very important that we think about my future because our decisions today affect the rest of my life.
Aaron Jacob Campbell
Son of Carl and Natasha Campbell
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