My baby's First Steps

Kaitlyn's second time driving her powerchair. We are still working on hand positioning and stop-go (mostly go,go,go) LOL

Category:

People & Blogs

Tags:

• SMA
• Spinal Muscular Atrophy

[heathersheartable]

Why is everyone so focused on the technology and the condition?!?! Kaitlyn is MOVING on her own...this is fantastic for her. She looks fantastic and might i add that i got a little chuckle over her calling for the baby...hehe. Thank you for letting my enjoy such a happy moment with you and Kaitlyn :)

[kaitlynhatchard]

@heathersheartable I am delighted that you enjoyed our video! It was a proud and happy moment for my husband and I to watch our daughter have her first taste of independance! Kaitlyn relys on us for EVERYTHING! She had zero independance before this chair.

[kaitlynhatchard]

The only movement she has is the very subtle lift of her little fingers you cansee in the video. She is otherwise completely paralysed. So you see, to watch her move for the first time and know the world this would open for her was a very emotional moment for us!

[kaitlynhatchard]

As for the other comments...we welcome ALL comments (as long as nobody is outwardly rude or intentionally hurtful)! Children with Spinal Muscular Atrophy are often given up on by doctors! We want to enlighten the world that these children have a right to live; that they can and are enjoying life. They have a great deal to contribute. I know our Kaitlyn has re-taught us everything we used to think we knew about compassion, unconditional love, patience, faith and humility!

[LectronCircuits]

We are glad that this technology is available to help folks. We robotics and systems-control engineers sometimes get so enamored with the science & engineering itself that we lose some sensitivity to the actual folks who interface with the technology. We wish you folks the best.

[kaitlynhatchard]

@LectronCircuits If you really are "robotics and systems-control engineers" and are actually making devices/software then you should be more sensitive to the needs (both physical and emotional) of your clients! I too think this technology is exciting but let us not forget for whom it was designed :) I know you meant no real harm. I appreciate your response. Cheers, KIM ...AKA a VERY devoted and protective Mama

[kaitlynhatchard]

Thank you for your comment, however Kaitlyn's spine is not "hosed"! She has a neuromuscular condition which causes her muscles to atrophy! She has extreme muscle weakness. There is not a thing wrong with her actual spine. She is even lacking the curvaure of someone with muscle weakness that has been sat up unsupported :)

[kaitlynhatchard]

While I do not feel malace from your comment, your comparison of my daughter to the borg is frankly a bit disturbing! I will allow your ignorance. K USES machines because she has no choice! She enjoys and appreciates every breath and moment she is allotted....I'm guessing you cannot say the same. This was an extremely proud moment for us! We were told K would not live past 6-9 months! Imagine someday someone comments and says something uninformed!! How would you feel??

[LectronCircuits]

Awesome technology greatly helps grievously-afflicted folks. Servo systems and sensors are excellent products of engineering. With apologies to Kaitlyn, we must note that her appearance in this setting is reminiscent of the "Borg" characters in "Star Trek the Next Generation" TV series. Keep up the good work. Cheers!

[pantyflash]

Like, even though your spine is hosed, you can be mobile. You go, girl!