by Edward Flores, 12/05/2024
I posted a document that I wrote September 4, 2012. You can view the link here: https://sway.cloud.microsoft/A4f5O3H7rq1NoRnm?ref=Link
I want to thank my cousin Vito Giardina for his help and support throughout the years. I love you, my brother.
Thank you in advance to James Whitehead for doing whatever you are able to do and thank you for your support.
I was asked to provide a brief history of events.
1998: Michelle “Shelli” Flores (Carr) – misdiagnosed with Multiple Sclerosis.
2001: Divorced. Shelli wanted a divorce due to the disease, stress of marriage, kids, finances. I continued to support her as I was able.
2004: Christopher began exhibiting symptoms of SCA7.
http://www.ncbi.nlm.nih.gov/books/NBK1256/
2006: Christopher was diagnosed with SCA7. He was legally blind at this point and motor functions declined.
Edward also enlists in the US Navy, no signs or symptoms of the disease at this point.
2009/2010: Edward first begins showing signs of the disease aboard ship and is diagnosed with SCA7.
2010: By Oct, Christopher was in a wheelchair. Ready to graduate High School.
Edward is approved for a 2nd enlistment contract with the US Navy.
2011: Due to the progression of the disease with Christopher and inability/age of my parents to care for him on my scheduled work days, in July, I requested FMLA from Osceola Sheriff’s Office and then used my personal time and leave of absence until Dec 31, 2011. I decided to retire from 20 years in law enforcement to care for Christopher (primarily) and Shelli (as I was able.)
2015: Edward seeks reenlistment from US Navy and is commanded to go before medical review for the disease. He is sent to Shands hospital in Gainesville, FL. Clinical researchers at University of Florida – Shands Hospital evaluate Edward and put us in contact with Dr. Al LaSpada, MD. He is a clinical researcher who stopped the progression of the disease in mice in 2014. Since then, he has been working with Ionis Labs to get into human trials. The information on his work is detailed in the above link for the NIH, National Institutes of Health.
2016: August – With much help and assistance from his command at NALO. Edward receives an Honorable Discharge and 100% medical retirement service connected, from the US Navy, citing that onset of the disease began during his service and the stress of the military, worsened the condition.
2016: December – Edward marries Brittany N Smith (Flores)
2017: February, Christopher’s ataxia had come to a point where he could no longer lift himself from the wheelchair for me to clean him or change his disposable briefs.
May 2017: Aspiration Pneumonia – Christopher
From May 2017 to April 2018, there were numerous visits local hospitals for lengthy in-patient care and procedures to drain Christopher’s lungs of Empyema, due to the Pneumonia.
Jan 2018 – Received word from Dr. LaSpada that he would not be going into Phase 1 trials with any therapy for SCA7 for at least a year and half. Christopher is disappointed.
March 2018 – Christopher has pneumonia again.
April 2018 – Christopher’s last fight with pneumonia, he passes April 29, 2018.
2018 – July Shelli passes from SCA 7
Oct – Brittany receives orders from US Navy and is assigned to Washington State.
2019 – Edward and Brittany move to Washington State.
April through August, I go to Washington State to help with Edward’s VA visits to help establish care with the VA.
2023 – July, Edward informs me that Brittany wants a divorce. I flew to Washington State to care for Edward.
2024 – Edward files for divorce in September.
I am attempting to coordinate the move for Edward.
I have been reaching out to the VA and their resources. I have been calling and emailing the following to the VA resources:
My name is Ed Flores, and my son, Edward Anthony Flores. He is a US Navy, 100% service-connected disabled veteran who bravely served our country, including missions involving drug interdiction from South America and pirate interdiction off the coast of Africa. The Navy has attributed the worsening of his debilitating condition, Spinocerebellar Ataxia Type 7 (SCA7 Atxn 7), to his service and to the stress of his service.
Edward is now primarily bed-bound and relies on a wheelchair for mobility. He has extremely low vision, “legal blind”, which will eventually lead to complete, zero vision/zero light” blindness. He has major motor function disabilities and ataxia which has left him unable to walk or care for himself. He requires constant care and assistance with nearly all daily activities. Due to his condition and my need to provide him with the best possible care, I am urgently trying to relocate him to Florida.
I left Florida, our home, in August 2023, to come to Washington State to care for Edward because his wife was leaving and divorcing Edward, leaving him with no support or caregiver.
We desperately need help with two critical aspects of this move:
Medical Transport: We require specialized medical transport to safely move Edward from Mount Vernon, WA to Groveland, FL, a suburb of Orlando, FL. His condition necessitates a transport service equipped to handle his unique needs and ensure his comfort and safety during the journey.
Household Goods Relocation: We also need assistance with moving his household belongings. As his primary caregiver, I am overwhelmed with the logistics of this move and would greatly appreciate any support in coordinating the transportation of his possessions.
We have to relocate to Florida because of, caregiver support, and medical necessity.
I have not yet identified any medical transport company or moving company that can meet our needs, but I am reaching out to you for assistance in securing services and exploring other potential resources.
Edward dedicated his life to serving our country, and now he needs help. Any support you can provide, whether it be financial assistance, logistical guidance, or simply connecting us with the right resources, would be a tremendous blessing.
Thank you for your time and consideration. I am available to speak at your earliest convenience and provide any further information you may require.
December 2024 – Still Attempting to coordinate both transportation of Edward and his household items.
12/12/24
The VA won’t approve the medical flight for my son from WA to FL. I figured we were probably a rare thing for the VA regarding handling this. I found out that VetAir, the medical airlift company offering to fly my son had to deny 45 Veterans this year alone who are also 100% disabled. Basically the same relocation circumstances. That’s only one Air Lift company that provides this service for Vets. There’s at least two other companies that do these flights. With all the waste in the government and the VA, not including the orgies at Tennessee VA, and the work President Trump did to try to fix the issues with the VA in his first term, the Vets are getting screwed the most.
