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[Guest guest]

Hi :

OH MY GOD!!! If i could keep my 15yr old daughter at home for 1hr, It would be

fantastic...Her name is and she has SMA type 2. She has been in a power

wheelchair since around 22 months (hot pink in color) She modeled for Little

Tykes. She has many, many " normal " friends, But her best friend is a girl who

is on a portable vent. They both go to regular High school. was just in

the High school play " Grease " she was the car grease and they built the car

around her. had a dance number in her wheelchair, it was the best scene in

the play. leaves the house for school at 710am and comes home some

evenings at 9pm. She calls me on her cell phone and usually is at her

girlfriends house playing guitar hero. She has gone to more concerts than I ever

went to in my teenage years. At one concert she was in the mausch (spelled

wrong) pit, which is where the kids are crashing into each other and crowd

surfing over other kids heads. When came outside, her

joystick was hanging to the ground , her tilt on her wheelchair was tilted all

the way forward (looked like she was going to fall out of the chair).

looked up at me and said " mom I know it looks bad, but I had the best time of my

life. " Now How can I get mad. Took explaining to the medical company who fixed

the chair.. goes to multiple camps throughout the summer. When the van

pulls up We are practically mobbed before I bring out. So I guess what I

am trying to say is I have never put any restrictions on as far as what

she can do or what she can be. does have a good head on her shoulders and

wants to go into fashion design. I know is very happy and she has told me

she would never change a thing about her disability, nor misses walking. I think

its me sometimes feeling the sorrow for her.

CHRIS