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Jojo at 6 mos. old
I miss the smile ;(
Living with Spinal Muscular Atrophy
This is a snap shot of our life with Spinal Muscular Atrophy. After we found out that our son Joseph (Jojo) had SMA, we grieved. We grieved for all the motor milestones that he would never meet, and for the life that we dreamed and visualized for him. It is tragic to see our child not being able to move much, and then to watch as he progressively loses even those minimal movements and skills that he was born with. But we learn to adjust and keep the focus away from our grief. Because really, he is not fundamentally different from kids his own age: he learns stuff, he knows what he wants, he rationalizes, he whines and occasionally throws a tantrum, and he knows how to wrap his Mom and especially his Dad around his little finger.
Jojo at 6 mos. old
I miss the smile ;(
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WOW! Thanks for sharing. I'm going to get the Joypad app for Drew today.
ReplyDeleteokay this is awesome, going to get this and share with Junior's teacher.
ReplyDeleteHi Joseph!
ReplyDeleteMy name is Jenna and I came across your site. U are an amazing brave courageous, strong, dertermined happy fighter. U are full of life, spunk, smiles. love, joy and you are an inspirational hero. You are a true Champion, warrior and trooper.
I was born with a rare life threatening disease.
www.miraclechamp.webs.com
I need to get more techy, Sky would love this, Im going to have to study your video and figure out how to do this for Skylar. LOVE it!!!!! way to go Jojo
ReplyDeleteya know Ive had this app on Skys ipad for months, and I just now figured out how we could adapt a PS3 controller and plug it into it so he can play PS3 games, now to tell his daddy so he can make the changes! so excited!!!!
ReplyDelete