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This fundraiser ended on 12/31/10

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The family of Jamie is asking for assistance to make her daily life more accessible and meaningful.

Here is her story. She was born in 1958 with Neuroblastoma. Actually, it appeared as a tumor attached to her spine. When the doctors (12 surgeons, UMC, Jackson, MS) removed the mass, it left her paraplegic with kidney and bladder problems. From all medical records, the surgeons were unable to remove all of it and part of the mass remained. However, within approx. a month - the remainder disappeared. Gods will / God’s blessing. We have never known, but God is where we give thanks. I also understand the 12 surgeons had a prayer session prior to the surgery. However, with all their effort, she was never considered cancer free. My parents received letters from the University until she was 21 wanting to know if she was still alive. During her young life, they were consistently informed that she would not survive, till 1 yr, 2 yr, 5 yr and on.... She would never walk, never have children, never have a life, never drive, never work..... And the list went on. She proved them wrong on all of it.

From birth, my sister has undergone several surgeries on her legs, feet, etc. She lived in a wheelchair or was physically moved from room to room. At a young age, she would sneak into the bathroom and teach herself how to walk. Basically, balancing and throwing her legs forward. She did it so well; she was given braces and crutches. This was the beginning of her life.....

From that point forward, she was determined to have a life. She married, had 2 children, kept a home and worked as a receptionist for the State of Mississippi for 9 1/2 years. It was at that point that the consequences of her disability worsened, pain and spinal movement/deterioration. For the first time, she filed for disability. You see, my parents NEVER filed for disability on her, they wanted her to lead a normal life. Although she was disabled from birth, Social Security does not consider her that way. And although, my father was a WWII 100% service-connected DAV - she does not qualify for VA benefits, because he never filed for her disability and she married. I think it’s a shame that VA discriminates against a disabled child for trying to have a normal life...She does not receive any benefits other than by her own work experience. From our knowledge, when she was born, my Father was told to ask for help from a well-known organization - who basically told him (in 1958) that Neuroblastoma was a death-sentence and a child would not survive. Therefore, they offered no support for the surgery. My parents, I believe received the surgery for 'free' from the surgeons who volunteered for it. But, ended up paying the rest. My parents (both deceased) were 'good' people, they raised us to 'take care of ourselves', 'to work', 'to support our families' and 'to give' rather than receive. They were both hard workers and expected us to do the same.

Because of the worsening of the spinal deterioration she was put in a wheelchair fulltime, approx. 5 years ago. Spinal surgery for her would cause her to be bedridden with body cast and fulltime nursing care - that is not an option...It would truly 'disable' her.

This past year, she has undergone amputation on her left leg and a urostomy for bladder failure. It has again 'disabled' her. Many would think that because a person is disabled, they should know how to be… That is wrong, they can be re-disabled. It has changed the way her normal daily life is lived. She stayed in Methodist Rehabilitation Center for a month+ learning ‘how to be disabled’ all over again. Losing balance on what 'balance' she had with her legs in transferring from bed, bath, and wheelchair. During all of this, her partner/roommate walked out, leaving her in the hospital with all the medical bills, household expenses and after-care needs. I took her in. She now lives with me, her sister.

Here's the problem.... I have a large room for her (garage remodel). We have completely moved all of her things from the apartment and made the area hers. But, I have no bathroom - She uses a potty chair and I take care of the rest. I have no way out the back door for her. My laundry room is too small for the wheelchair. My kitchen is narrow and hard for her to get to cabinets. I sat and watched her stretch to get ice from the freezer. We now have a new one with the ice and water in the door. The sad truth is - she has been ‘independently’ disabled all of her/my life - I never knew. When I ask - she tells me 'it's fine'.... When I watch - I see that it’s not. After years of being on crutches or in a wheelchair, I think she just copes and accepts the fact that nothing is within her reach. We also purchased a larger TV. She sits in the chair all day, without access to many of these things. Because of the inaccessibility, she mainly goes from bedroom to kitchen table. She needed something more... and of course this went on the charge card. I know priorities may seem unusual. But I have to consider that she lost everything this past year, her independence, her home and her health. These were provided to keep the mind busy. I can deal with the potty chair, bath needs and after-care.

Now, here's the real truth. Some things I can provide and will provide. But, I need help with the rest. We were all raised to 'take care of ourselves' so I really don't know 'HOW' to ask or 'WHOM'. I searched the web, found several sites with drop-down boxes for residence, Mississippi is not listed... I have registered with the State of Mississippi for assistance with the bathroom, ramps and widening door. I never hear from them, unless I call and all I get is 'your on the list'. I never received confirmation of the 'list'. So we wait. Her situation requires her to have a special fitted power chair, which we are working on. From my understanding it will cost approx. $14,000.00, Medicare will cover 80 %( I think) of it. She will have to have this because of her situation and because she has another surgery coming up for her shoulder. This (the chair) is a wonderful thing. However, she will be limited to the house. I don't have ramps for a 400 pound power chair and my 99 Camry won't carry it. Up to this point, I have assembled/disassembled the wheelchair for travel. She can easily transfer into the Camry with no problems – so I have kept it. I have tried to price these vans, went to several sites and was amazed/shocked at the technology and the price....for the new Toyota sienna - complete with lift or ramp costs approx. $55000.00. There is no way I can afford this. Much less, how can a disabled person. Other sites some used models I found for $26,000.00 - $39,000.00. I have found that some automobile companies will offer approx. $2500.00 toward the cost of wheelchair lifts - if you purchase the vehicle from them...I am still working on this one.

What I need: 1.) Strong Ramps (approx: $1,500.00) both front and back, preferably metal because of the chair weight, 2.) Doors widened, front and back (approx: $1,500.00),3.) A shower wheelchair (approx: $1000.00-$2500.00), I have priced at several sites, Medicare won't cover. She needs it for now (without a bathroom) and later to independently shower without fear of falling. 4.) A full bathroom with wheelchair accessible shower (approx: $5000.00??) 5.) Home modification to make the laundry area more accessible (approx: $2500.00??) 6.) Home modification to expand the kitchen and make it more accessible (approx: $40, 0000?? - scares me, I really don't know) 6.) A handicapped accessible van (approx: $30,000.00 - $60,000.00) 7.) Medical Bills. (approx: ????) its growing. The portion not paid by Medicare.

I have thought about moving, just get another house. However, I am afraid I can't sell the one I have and I can't afford 2 of them. I know I have to look for a wheel-chair accessible van. Her chair will be ordered this month. So the thought of paying for a new vehicle AND another home is not something I can do. The vehicle will have to come first.

I would appreciate any information, donation or item on the wish list that can be given for my sister’s daily needs. I sincerely appreciate your time.

Every statement in this letter can be verified, with the doctors, hospitals etc. From what I add up in the needs list ($113,000.00 High values/? retail values), I am not sure I can do this quickly or in my lifetime. I am also not sure how long the wait is for the State of Mississippi to provide assistance as they state on their website. I am now 5 months on 'the list' and I hear some people have waited a year or more.
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