Jacob has been diagnosed with a 1.21 Mb interstitial deletion of chromosome 17q22. The result of this deletion has caused a number of known and unknown issues for Jacob. He has microcephaly, reduced muscle tone, and mental and physical developmental delays. There are only a few other children in the world who we have found to have a similar deletion and therefor not a lot is known about what Jacob’s future looks like. As of right now we know that this deletion causes contractures of large joints in Jacob. He has always had an unsteady gate and can’t run very well. Jacob is currently wearing orthotics on his ankles for assistance, making it difficult for him to pedal a bike. He is not on the autism spectrum but stimulates himself by curling his hands and waving his arms. He is very interactive with his peers and loves being around others.
Jacob was born 4 weeks premature. Ever since he has been met with many challenges. Fortunately, through it all he has always been a very loving, cooperative, and playful child. Jacob loves being outdoors! Now that he is 11 years old he continues to play with others, but gets frustrated when he sees them doing things he’d like to do, but can’t due to his disabilities. We do the best we can not to put restrictions on what he can and can’t do, but sometimes we have to tell him “no” because of the potential to get hurt. I know he would love to do more activities outside because sometimes I’ll find him sitting on the back porch enjoying the sunlight or waiving his arms as he skips through the backyard (stemming). If his siblings are outside, HE is outside!
I’ve been looking for other outside outlets for a long time. Ever since he could walk we’ve tried to put him on bicycles, tricycles, scooters, etc. without any luck. When he was small enough I’d take him for rides in a bicycle trailer and he loved it. As he got bigger we were able to put him on a co-pilot seat post mounted trailer. He was able to hold on and we stayed mostly on paved paths. Now he is too big for any of those types of devices. The bicycle I’m requesting is very versatile. It can carry a lot of weight (110lbs on the rear cargo rack) and is lighter than most other “cargo” type bicycles. It is considered a mid-tail cargo bike, which means it is shorter and therefor more maneuverable. This will allow us to transport it on family trips, and go off road on some trails. It is also a “fat-tire” bike, which provides more stability, a nicer ride, and gains better traction in the snow (for winter time riding). This bike will allow Jacob to ride along with us on our family outings more often. It will also provide another way for him and his siblings to share time together as they are big enough to pedal this bike.
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