Monday, September 15, 2014


Jacob's Physical Therapist Jill writes about what Jacob has taught her in light of Mitochondrial Awareness Week.

As a therapist, I love to see people do things that seem impossible. If you look at the symptoms that go along with a mitochondrial disorder, being able to move, talk, and play seem impossible. Having the energy for independent breathing seems impossible. Certainly riding a bike, teasing your sister, asking for time with dad, and telling your mom that you love her seem impossible.

Jacob can't voluntarily move any of the joints in his body. And when I met Jacob, he was only able to sit for about one minute, with lots of support--and even a lot of worry about how his breathing would hold up. In the year and a half that I've known Jacob, I've watched him do and inspire the impossible over and over.  

Jacob now sits up for 10+ minutes at a time, and often, his breathing is better when we are sitting up together (working hard!) than when he's laying down. Jacob uses his talker to tell his family and his nurses what he wants (even if what he wants is NOT to do his homework!). Jacob rides a bike, stands up in his stander, and can even fly (in his ceiling lift sling)!

As a therapist, I couldn't really ask for more heart or more inspiration than this. Jacob has taught me a lot about what is possible under conditions that seem impossible. It seemed impossible to have a ceiling lift installed in a home. It seemed impossible for Maria to bike through the Rockies. It seemed impossible to raise so much money just for mito research. It certainly seemed impossible for Jacob to do many of the things he does each day. 
I've loved being surprised by Jacob over and over as Maria sends me pictures and tells me stories of Jacob biking and swimming and sitting with Sarah, making friends at school, and inspiring everyone around him to try what seems impossible--for you just never know what you might accomplish if only you take that first step, write that first letter, climb that first hill, or sit up that first time. Thank you, Jacob, for surprising and inspiring me each week! 

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