Air Force Veteran Couple Seeks Grant Money For Wheelchair Accessible Space
(Cabot, AR, USA)
My husband Kenny and I are both military veterans. We're looking for help to build an ADA compliant addition to our home for our MS-disabled daughter.
Kenny is 51 years old and is a 26-year Air Force veteran. He's retired and 70 percent service connected disabled.
I am a 52 year old, 2 year and a month Air Force Veteran. I retired to raise our two children and support my husband's military service through Desert Shield, Desert Storm and many other military campaigns.
We have two children. Our girl Jessica is 27. Our son Nathaniel is 29. They are overcomers who have learned to turn bad situations into good with God's help.
The issue is our home just does not have enough room to adequately take care of Jessica's medical needs or Kenny's medical needs should he become wheelchair bound should his disability progress to 100 percent.
Jessica receives help with the TAP program due to her being hard of hearing. This is the Telephone Assistance Program. She has been partially deaf since she was about ten.
On September 11, 2003, at age 19, Jessica was diagnosed with pediatric osteosarcoma, a bone cancer condition.
She had many chemotherapy treatments for a grapefruit-size tumor located on the tibia bone of her right leg.
The doctors determined that Jessica had received a trauma to her leg while at camp and the last growth spurt did not develop correctly, and then turned cancerous with this tumor.
November 2003 the doctors helped her receive her SSI disability, as she was not physically able to work.
It took many chemotherapy treatments and months of hospitalization to shrink the tumor.
Finally on April 1st, 2004 Jessica had surgery to remove the tumor, part of the tibia bone and two of the three nerves of the lower right leg. A screw was put in place to avoid amputation.
Her last chemotherapy treatment was April 28, 2004. We thought she was out of the woods and were looking forward to the five years to be considered cancer free.
However, that would not be the case. She had every side effect that chemotherapy could cause: mouth sores, nausea, pain, vomiting and losing almost all her hair.
Then she started having headaches and eye issues. We first thought she was still having chemotherapy side effects.
A visit to an eye doctor August 2004 revealed she had optic neuritis. She lost her eyesight completely for almost two weeks.
They prescribed her steroids, which thankfully she did receive. Her eyesight came back but the side effect was a splattered spot pattern in her left eye vision.
She was referred to a neurologist that prescribed an MRI, which revealed a small lesion at the base of her neck.
He sent Jessica to Dr. Lee Archer, as his specialty was treatment for Multiple Sclerosis (MS). This was in 2005.
She had optic neuritis again in 2006 but she was fast acting and did not lose her eyesight totally.
She was put on steroids but her left eye sustained some damage. It no longer responds to light quickly at night and she has some double vision occasionally.
Another MRI showed that the lesion had dissolved at that time.
We finally got an appointment to see Dr. Lee Archer in January 2006 but Jessica could not be treated, as she was pregnant with her son who was born July 2007.
Dr. Archer thought the pregnancy hormones prevented the MS from flaring up as often, although Jessica still suffered from the back spasms, nausea, headaches, double vision, occasional vomiting and sensitivity to heat or cold.
After bearing her child, Jessica's MS treatment was to monitor her diet and supplement with vitamins and herbs.
We did not want to start a drug regimen, as she was still very young to do a lot of drug dependency yet.
She was lesion free on the next MRI. This course of treatment was working temporarily.
In August 2010 she started having more MS flare-ups. An MRI showed a new lesion, this time higher up the neck than before.
She had another episode of optic neuritis. Again she caught it quickly where she only lost eyesight for a few days.
In January 2011 she started taking the new approved MS drug Gilenya. For the last two months she has been having more MS flare-ups, back spasms, double vision, nausea and difficulty breathing.
Dr. Archer has ordered another MRI to see what might be causing her worsening symptoms.
Jessica has not been able to move out of the house to be on her own due to the financial responsibilities the economy requires like deposits, utilities, food, water, etc.
She receives no child support for her son. She was put in collections recently since she was unable to pay her 20% owed for the last MRI she had done in August 2010.
She was able to pay her bills up only because of income tax that came in this year.
She was unable to pay for her student loan that came due this year.
Thank goodness there is a program that is based on her income whether she has to pay or not.
It was determined she did not make enough to make the payments this year on that student loan.
She is also on a special program for Novartis that pays for her medication Gilenya. If it was not for that program she could not pay the $40 deductible each month for MS medicine.
Kenny and I help her by paying for her vitamin supplements and herbs. Kenny's Air Force Squadron workers came out and built a ramp for Jessica while she was in a wheelchair before tumor surgery in March 2004.
This is when we realized our existing house is not ADA compliant. She could not get her wheelchair in the bathroom to go to the bathroom.
We had to carry her to get to the toilet from her wheelchair at the door of the bathroom.
Her family of 2 lives in a 10 foot by 12-foot room, which has been her bedroom since we had moved into this house in 1991.
After she gets paid she barely has enough money left to put gas in her car to get to work.
The state recently took Patrick off of Medicaid for his health insurance so Jessica had to put him on her health insurance at work. This brought her paycheck bring home even less.
She does get WIC help from the state health department for now. The good news in all this is she was considered cancer free in 2009 from pediatric osteosarcoma.
That's five years free of any more cancer; however, she will forever be disabled with parts of her bones connected only by a screw.
She wears a leg brace if she is to be on her leg for long hours.
Jessica started working for a wage in March 2007 to February 2009 for a major retail company. This was a part-time 20-hour a week job due to leg weakness from the pediatric osteosarcoma.
She found a sit-down job in February 2009 until December 2009 and changed jobs working for a major call center.
They were able to give her an assistive device to help her with the phone calls being heard.
She had to change jobs due to excessive stress that was beginning to affect her work and MS flare-ups.
January 2010 to present she changed jobs again to another call center that is not as stressful than the last major call center.
We NEED to build onto our house a 25 x 30 foot addition to allow Jessica to have an ADA accessible handicap apartment for her and her son.
This would give her a feeling of being independent and the hope is to help relieve her stress of feeling inadequate to provide.
Also it will allow us to add a second-floor extension with ADA accessible bathroom to help in case Kenny becomes 100 percent disabled due to his back shifting or his diabetes getting worse, causing him to end up in a wheelchair.
Our existing house is NOT ADA accessible. The doors are 28 inches across for the bathroom, which is too small for any wheelchair to go into.
We are looking for a grant of $130,000, which is the amount quoted by a contractor that we have spoken to. This is to get the addition from foundation to move in occupation.
We have discussed this plan with Dr. Archer and his assistant Christy to determine if it could or would help relieve the stress on Jessica, knowing she has greater independence, while still having help close at hand.
He has also prescribed an aquatic spa to help her relax. The key is getting her body to relax and let her sleep soundly. She doesn't seem to be getting the REM sleep she needs.
An aquatic spa good for 5-6 people is about $8,000 to $10,000.
We thought we would have a few years to plan on this addition, but since her MS symptoms seem to be rapidly progressing and moving up the brain stem, we really need to do it this year.
The contractor states it can be built within 4 to 5 months depending on the weather.
Would you please help us be able to help our daughter Jessica fight this disease of MS by helping us with this grant to help build on to our existing house.
Kenny and I appreciate your consideration for this disabled grant for our daughter and Kenny, himself.
We pray we will never have the worst-case situation of total disability but we must plan as if it should ever occur.
Unfortunately the reality is that Multiple Sclerosis is an incurable disease we MUST plan for. THAT is the urgency.
I wish the first level of our house had been built correctly instead of being just a big crawl space. It should have been a basement.
The contractor states it is basically wasted space and that is why an addition is the only possible option.