Hi, I am trying to raise enough funds to help with my daughter, Jessica's future, and to make sure that we have the best summer ever. I am probably dying. I have gallbladder cancer and it has effected my eyes, feet, and now my vocal chords have a type of shell that has formed, which stops me from speaking above a whisper. They believe the radiation and chemo were successful so far, yet everything else that has come with the gallbladder cancer has heightened my awareness. The VA has denied my disability claim and has also garnished my SSI payment. I am taking major steps in reverse and will be destitute by December, should I live that long.
My daughter is a miracle child. Jess was born April 1, 1990. She is a 24 week preemie that weighed 14 ounces. Jess spent 14 months in the NICU at Cincinnati Childrens, 2 years in the trach unit at Childrens, and 2 years at St Joseph Home in Sharonville.'s primary diagnosis is VATERS syndrome. We were originally told Jess would be ventilator dependent, blind, and would have a short life. No one ever told Jess that, or convinced us of it. Jess Jess was the first trach patient ever admitted to St Joseph Home, and to my know the only patient ever discharged home. Jess is my blessing and purpose. She is on a basic Medicaid Waiver, yet many services are denied her. Her prognosis has never indicated a long life or any chance of living independently. Jess is 29, wheelchair dependent, incontinent of bowel and bladder, complete hands on for everyday living, and dependent upon respiratory meds to maintain her health. Jess has had over 150 surgical procedures and has been given the Last Rites four times. Two years ago, I began keeping Jess at home, and she began to develop beyond anything ever imagined. Jess has also began to have gran mal seizures, which they believe were caused by seeing me in bad shape at the VA. I will not allow Jess to be taken to the VA for any reason. I try to take her out 3 times a week for live music. Live music seems to be the catalyst for her development and her social skills. She has now progressed beyond her prognosis multiple times, and I believe she may get out the lyrics to one of her favorite songs before 2020.
I want to first keep Jess in our home. We have lived in Kentucky our entire life. We love our home, Kentucky, and America. While we are still able to pay our mortgage, it will not be for long. I also want to take Jess to all the events I can this summer. We do not usually go to concerts. We go to local venues and festivals. Concert facilities are not very accessible for someone with Jess's disabilities. She uses a wheelchair and has limited vision. While I could get her into general seating areas, imagine the view when everyone stands. The local musicians have been amazing accepting Jess and playing her favorite songs. We have met some extraordinary people.
I have no idea how much to even begin to try to raise. I would like for Jess to be secure in her home, for her entire life. Right now we have a 70,000.00 mortgage balance. I am guessing that 30,000.00 would create enough of a cushion for Jess to live comfortable, should I not survive and to get us through the VA's administrative heavy hand. I am very thankful for the care and treatment I have received medially at the Cincinnati VA. As far as administrative and support, it is non existent. When I developed Palmer-Planter Erythrodysesthesia, and needed a ride to daily radiation treatments, I was told to contact the American Cancer Society. The VA may or may not be able to pick me up somewhere close to where I live, maybe. If there is anything you could do to help, I would be so grateful. My name is Joe Dirkes and I am on facebook. I post almost daily about how great our life is and how much Jess is developing and loves music