Sophie was born with Hydrocephalus, among other complications. When my wife was pregnant with her, she developed Pre-eclampsia which got the ball rolling on everything. She also has Cyclic Vomiting, seizures and epilepsy. Sophie is non-ambulatory and non-verbal. Mentally, she is a year old.
Multiple surgeries for VP shunts before she was even a year old and has had to have several revisions over the years. The latest surgery was in June of 2012 when she developed a staph infection around the shunt which caused a blockage.
She turns 8 years old in a few short months and has outgrown her current wheelchair by quite a bit. We're looking to get a new chair that has accessories to make her life a little bit easier. Unfortunately, the cost of a chair which suits her needs has a staggering cost and Medicaid is fighting us tooth and nail. Even if they agree to a new chair, it will be fairly bare bones.
Here's a list of what we need, and why:
It needs to be "tilt-in-space". We don't have a wheelchair accessible van, the chair needs to be able to tilt to fit in the rear of our mini-van (while she is transferred to a car seat).
A canopy. We live in the desert, so it will help block the sun.
Transit hooks, for securely attaching safety harnesses on the school bus.
Trunk support harness, since she can't sit up on her own and this has caused spinal curvature. As seen here:
Foot positioners, to keep her feet in place. She's caused injury before with her feet being loose.
Extended handles for tall caregivers. I'm 6'4" tall and already have back problems.
Tray support, for school.
Medial thigh support to improve posture and stretch out her stiff hips.
Head support to help keep her positioned.
Utility bag to hold belongings when out of the house.
...and more. As you can see there's a lot of modifications that need to be done to keep her comfortable. The majority of these additions add around $150 to the bill of a chair that already costs $1,800.
If there's any fundraiser money left over, I would like to also get a fold-away ramp for use with the van and/or getting into our home.
Thank you for taking a look and a special thank you to anyone who can help donate.
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