Modified Bike For Child with S.M.A.
Greetings to all:
I am interested in buying, building or modify a bike for my 2 1/2 year old son who has spinal muscular atrophy. At this point I just want something he can sit on with some upper body support (chair type) and for him to pedal with very low resistance.
Longer term I want sensors in the pedals to detect level of effort and relay the detected effort to a small motor to assist with propulsion.
My son is intellectually fully functional. He has weak legs, trunk and arms. He is being provided physical and occupational therapy. We are encouraged to keep him active without exhausting him.
Would a recumbent be more his speed?
This would keep his torso more supported while allowing him to pedal fairly easily. There are trike recumbents that would provide stability until he was comfortable riding a two-wheeler, but I don't know how small they make them.
This past week I met a guy who rode a bike equipped with a BionX electric motor (http://www.greenspeed.us/bionx_motor_bike_kit.htm). The bike has pedal assistance as well as being able to detect which foot pedals more and which pedals less and will compensate on the weaker foot to enable a more consistent pedal. It looked wild, and he really loved it. He'd ride all day under his own power and when he got tired, he'd kick on the motor and cruise at 20mph.
A recumbent trike will give you the chair type seat and if you fit MTB cranks it will be very easy to pedal even on hills, you can get a Bionx assist hub motor and controller that will fit any bike/trike that will take your input and add the selected power boost to it.
Unfortunately neither is cheap.
I think my friend's twins also have spinal muscular atrophy. At least they also have weak legs, arms and trunk. Due to this weakness, they sometimes have problems balancing.
He got them therapy kids bicycles, that have a very stable (and oversized) version of training wheels. The bikes have straps and a leg support on the pedals and a saddle that looks like a regular saddle, but has an added back support. The back support also comes with Velcro straps to prevent the kids from falling to the side or the front.
I think the bikes he got are from this company: http://www.draisin.com/en/index.htm
Maybe the "Cathrin 16" and the "Dominique 16" and some of the stuff from the "Accessories" would help. Unfortunately the company is in Germany, so probably buying from them is not so much of an option, since the bike should be test ridden by your son. But there should be a similar manufacturer in the US.
I love making bikes for special needs. Oftentimes this can give freedom to someone who otherwise doesn't get around much. We've made handcycles, a bike for a guy with muscular dystonia, one for a kid with CP, bikes for little people (who can't just ride kids bikes, torso too long), bikes for blind guys, trikes for people with balance issues, etc etc.
Have you considered some kind of combination bike that would allow you to do most of the work? The one I'm making for the kid with CP is like an ice cream cart with his wheelchair on front. So, maybe, you pedal in back and he pedals up front (and steers if he likes)... in a two or three wheeled variety.
How is his balance?
The cheapest, easiest solution- buy one of those adult tricycles and add a back rest. I think you can get them for $300 or even less used. Many of these things are designed to include an electric assist motor. Hand throttles would be cheaper than the automatic kind.
The problem with recumbents is that they can be hard to get started- you have to lift your feet and pedal hard and fast to get the balance. They require just a bit of explosive power at first even though the ride in general is very gentle.
I'm excited about this project! Where are you located?
Hi. My niece Angel has SMA Type I. She was diagnosed at 5 mo. old and my sister and her husband were told that their baby could die as young as 6 mo. old and would not live past the age of 2 yrs. My niece will now be 4 yrs. old in January and her parents take nothing for granted. They live for each and every day that they are given. Angel is beautiful and smart and just wants to be like other kids. She says she wants to be able to "run" when she grows up. She has never ran, walked, or crawled. She doesn't know what it's like to be mobile on her own, only someone else pushing her. It would be a dream come true for Angel and her parents if she was able to ride some type of bike in her court with the other kids that she sees outside everyday. If there is anything that you could do for her, I can't tell you what it would mean.
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