A special van for a special Roxanne

Our daughter Roxanne, now almost 16, began having seizures when she was just eight months old. Roxanne was a twin. Our son Austin died during the birth. Doctors were unable to control her seizures as an infant, which ultimately caused brain damage (encephalopathy), and left her severely cognitively delayed. To date she has had several diagnoses, including an intractable seizure disorder (Idiopathic Generalized Epilepsy), Autism, severe progressive Scoliosis, surgery for a tethered spinal cord , as well being non-verbal. She needs assistance with all her ADL’s (Activities of Daily Living - routine activities that people do every day without needing assistance. There are six basic ADLs: eating, bathing, dressing, toileting, transferring (walking) and continence.)  She requires twenty four hour care. Her seizures have become stronger and harder as she grows older, requiring longer periods of recuperation. Because of the severity of her scoliosis, it has caused her left foot to turn out, her left leg to drag and the inability to ambulate for more than a few steps without discomfort. The combination of medications she takes to help control her seizures, as well as her cognitive delays, have compromised her ability to balance while standing or walking and therefore requires continual hands-on assistance. Through all of this, Roxanne’s determination, inner light and amazing personality have helped keep our spirits lifted and more determined to provide her with the best quality of life we possibly can.



I, as her mother, am her primary caretaker. It has become apparent her daily needs exceed my physical capabilities. I have had four spinal surgeries resulting from Degenerative Disc Disease requiring titanium rods to fuse my spine and to date the surgeries have not yielded the desired results of mitigating the pain. This makes transfers (bathing, toileting, up and downs stairs, in and out of vehicles) extremely difficult and precarious.  The combination of Roxanne’s instability, high risk of having a seizure and my own orthopedic injuries poses a great risk for potential injury to both of us.There have already been several occurrences of me not being able to support her and both of us falling. 

Roxy was recently fitted for a new customized wheelchair, the ‘Quickie Iris SE’ that will help on so many levels. It was designed to tilt, to assist Roxanne getting in and out of the wheelchair.  As of now, she needs to physically be lifted into her current chair and it puts a tremendous strain on my back. Very specific measurements were taken to help take pressure off her spine and reduce pain from her scoliosis, as she spends a good portion of her day seated in a chair. She will be able to qualify for an assistive technology device to help her communicate, since it will be able to attach to the wheelchair. She does not qualify currently because she has a tendency to swipe anything in her reach and until she gets this wheelchair, our district will not give her a full evaluation for an assistive technology device which would help give her the ability to communicate her needs.  We genuinely believe the new wheelchair will dramatically improve her daily quality of life. 

Here is our dilemma:  In order to transport this wheelchair, we need a van with a lift. This wheelchair is designed to be used to transfer in a van or bus. This provides the safest and secure way to transfer Roxanne. It cannot fit into the back or trunk of a car and cannot be folded. We will need to rent a truck/van to transport the wheelchair from the hospital where she was fitted.  Beyond that, the wheelchair will have to remain either at our home or at her school, not having the necessary customized van for transportation. This would not allow the optimal use of the wheelchair and would not avail Roxanne its full benefits.

We are a one income family with two disabled people, who combined require fifteen prescribed medications per month and see specialized doctors on a regular basis.  Given the rising cost of health insurance, in conjunction with our increasing out of pocket medical expenses, we are unable to afford the cost of the customized van which Roxanne so desperately needs.

Thank you so very much for your time and consideration.  We would be deeply grateful for any donation or gesture of help/support you might be able to offer.  No amount is too small and all gifts will truly be a blessing.  If you are not in a position to share a gift at this time, we kindly ask that you please consider sharing our page with others.