Grandma Katie Seeks Wheelchair Accessible Van For Disabled Granddaughter
by Katie O'Kelley
(Salem, Oregon, USA)
I am a single female who will be turning 60 years old this year. I have been in a domestic partnership since October of 2006.
Shortly after our relationship began, two of my grandchildren began spending weekends with us over a period of six months when their mother and father split up.
In February of 2008, due to some extreme circumstances, both of my grandchildren began living with me on a full-time basis. At that time my oldest grandson was six and my youngest granddaughter was one year old.
It was a struggle for a newly formed relationship to reconcile such a major change on the home front. Struggle we did to the changes, but eventually we were able to settle into something of a newly formed routine.Disability Issues
Within two weeks of when my grandson and granddaughter began living with us full-time, my granddaughter began showing a slight limp on her left side.
At first it was barely noticeable, but within that first two weeks her limp became much more apparent and I noticed that she had also quit using her left hand while at play.
After a phone call to the pediatrician, I was advised to bring her in immediately. She was examined and observed as she walked by two separate Doctors in the clinic.
They told me they suspected she may have had a stroke and that she would need to be taken to Doernbecher Children's Hospital for more complete testing and an MRI.
That was March 2008 and she was 18 months old. That first hospitalization showed no evidence of the stroke they were looking for. Within three months of onset she quit walking altogether. She began losing her speech abilities as well.
She was hospitalized again the end of June 2008, followed by three weeks in hospital at Legacy Emanuel for intensive inpatient therapy.
On release we began a battery of appointments for her eyes, her hearing, etc. We began being seen at the Neuro-Metabolic Clinic at Doernbecher and testing continued, including genetic testing.
Her test results have been sent around the world and back. We have traveled to DeKalb, Illinois and to Bethesda Maryland where she was accepted into the Undiagnosed Diseases program three and a half years ago.
She is still currently undiagnosed and is also a Shriner's patient where she has endured three separate surgeries, one on each hip to prevent dislocation and the last on her feet to realign the bones and fuse the ankles.Financial Hardship
In July 2009 my grandson returned to live with his father. My granddaughter continued to live with me.
My partner was running a business at home while I worked. In that same year our home repair business was shut down. We were forced to look for a shop and had to look at expenses for childcare.
Soon afterwards we were given a 30-day notice due to the landlord losing his other home and his business failing. Soon afterwards our shared shop situation also changed and we were left with the entire burden.
We had to close the shop due to funds and were looking at higher rents as well for our home. Another shop opportunity for shared space presented itself, and once again we were left holding the bag and had to close that one down as well.
We also were left to suddenly find another place to live one year after our move. I found an opportunity to purchase a home under owner carried contract with the thought of being able to clean up my credit before I would need to look at conventional financing.
Shortly after that my employer began massive layoffs due to the economy. With cut hours and unpaid days I have not had the opportunity to clean up my credit situation.
My house payments have continued to rise as the property taxes have risen even though values have decreased.
Just within the last couple of months we were shut down once again from running a repair business at home, so we have again had income pulled out from under us.
My vehicles are getting older.
I have to look for other house funding, most likely at higher rates.
Just four months ago my grandson moved back in with a much larger appetite.Income Efforts
We have continued to look for ways to increase our financial stability. I have applied for several part-time positions, but to no avail.
We are making every effort to make my partner's business a mobile business, but it has not proven very fruitful or financially efficient.
We take advantage of the food boxes at local churches as much as possible and try to find ways to be frugal whenever possible.
We have tried to find a product that people would be interested in purchasing that we can make, but have not been very successful in those efforts so far.
My granddaughter does receive SSI, thank goodness or we would never make it at all.Specific Needs
My granddaughter is now eight years old. It is nearly impossible for me to lift her up and carry her at all. A trip to the store is barely manageable and wears me out.
Her physical therapist along with a mobility provider trialed a power chair for her. She has done exceedingly well with the chair. We are all working with insurance to obtain a power wheelchair for her.
I can barely transport her and her current chair now. With a power chair I will no longer have the ability to transport her at all. She will have an awesome chair, but won't be able to go anywhere unless we can walk there.
We are in desperate need of a vehicle that will allow us to transport her as well as her new chair. I can't afford a vehicle payment even if I found someone willing to finance one.