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Need help with a Make-A-Wish

Posted: December 18th 2009

digitalgoddess

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Hello everyone. I am a Make-A-Wish wishgiver, and have just been assigned a 13 yo girl with Mitochondrial Encephalopathy. Mom told me tonight that her daughter is confined to a wheelchair 100%, has a trach, a feeding tube,is on oxygen, and seems to respond to nothing other than red flashing light outside their home. I need direction of what I can do for her wish.Since she is unable to communicate at all, mom is making the request for a wish on her behalf.

Mom is unable to think of anything that she would like, enjoy, or would stimulate her interest. Do any of you have any suggestions ?? If we did over her room with bright colors and lights,would that help with  her stimulation/cognative ??

I really would appreciate any input in this matter.

 

Colleen Mills

digitalgoddess1958@yahoo.com

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Colleen Mills

 
sharon_alan's picture

Hi Colleen, To turn her

Submitted by sharon_alan on Sat, 12/19/2009 - 4:39pm.

Hi Colleen, To turn her room into a 'Sensory Room' would be fantastic for her. This would most certainly stimulate her senses as she already responds to the red light so you can build on this. Touchy feely wall coverings etc so her wheelchair can be placed by them and Mum or family can sit with her and guide her hand to the different textures in the room. My son who is nearly 3 has Pearson's syndrome and we are currently doing the same for him as sensory equipment he really enjoys. Look on www.spacekraft.co.uk it will give you plenty of ideas. I hope this helps in someway. Sharon
cellolover's picture

I wonder if in addition to a

Submitted by cellolover on Sun, 12/20/2009 - 1:48pm.

I wonder if in addition to a sensory room it might be nice to have outside sounds. As mito progresses it gets harder and harder to get outside, so if she still has hearing she might enjoy a recording of birds chirping, waves on a beach, etc. For some pictures of a sensory room done for a kid with mito you can go to wwww.caringbridge.org/visit/howsthemissus and click on the photo page.
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Rachel- I have abnormalities in Complex I,II, and V. I also married a wonderful man on June 5, 2010.