HELP DEREK KHOURI FIGHT his FIGHT

Three years ago, Derek had it all - a loving bride, a promising career, and a beautiful new home. In 2019 Derek had a failed spine surgery that severely damaged his spinal cord, spinal nerves, and muscular system.  Due to that, Derek is now battling 2 Rare Diseases, Arachnoiditis and Complex Regional Pain Syndrome (CRPS) , Full Body.   Medically speaking, these are the most painful disease known to man - equivalent to metastatic bone cancer.  

Arachnoiditis is a rare disease of inflammation surrounding the Brain, Spinal Nerve Roots, Spinal Cord and Cover.  It glues the nerves together, causing extremely limited function, severe neurological damage and excruciating 24/7 pain, taking over your life, throwing you into a nightmare of suffering and grief.   It also causes other serious diseases/illnesses.  The pain is so inhumane that one doctor described it as “the pain of end stage cancer, without the relief of death."

https://www.spineuniverse.com/conditions/spinal-disorders/arachnoiditis


CRPS is a neurological and vascular severe pain dysfunction.  It is an imbalance and malfunction of the nervous system and mistranslates nerve signals to be received as extreme and agonizing pain.  It undermines the immune system and causes excess and prolonged burning shooting pains and sensation, while causing swelling red/blue blotchy skin, vascular concerns, and crippling heat and touch sensitivity.  Sufferers have explained it as, “Feeling like you’re always on fire while someone is stabbing you with a knife, and you are walking on glass.”

For almost 2 years, these diseases also known as “The Suicide Disease” and the “Silent Killer Disease” have been causing 32-year-old Derek unbearable pain, leaving him bed-ridden, and flat on his back 24 hours a day. His body is ravaged by sensations such as burning electrical shocks, vibrations, dripping water, and crawling bugs, and he suffers from vascular insufficiency, insomnia, spinal headaches, as well as organ and immune dysfunction. There is no cure for either of these diseases, leaving Derek with no real quality of life at this point.

In addition to the excruciating physical pain, Derek must deal with the associated emotional distress and staggering financial strain. He mourns the life that he worked so hard to build; one that included a career that he loved and thrived in, and laughter with his wife, family, and friends.  He is also incredibly scared about what his life is becoming and how he will manage. 

Derek already has spent $40,000 out of pocket in 2020 for medical care, imaging, and experimental treatments, and that is with his insurance contribution.

It’s anticipated that Derek’s 2021 out of pocket expenses are expected to be into the 6 figures to try an experimental Stem Cell treatment and for his medicines, medical/total health care, home health care, supplies and home renovations, medical travel, etc., associated with Derek’s worsening progression.  These expenses include: 

Stem Cell Therapy. Derek wants the ability to pursue the experimental Stem Cell Therapy to help his body do the healing it hasn't been able to do on its own. Stem Cell is currently being researched for its efficacy inside the spine. Stem Cell Treatment will cost $25,000+.  Derek must fly out of state and cannot sit or recline, so he requires a medic flight for transport, which is $14,000+. He will also need accommodations for 2-3 weeks following the procedure.                                                                              

24/7 care. Derek requires 24/7 care as he is now unable to perform even the simplest of everyday tasks or be left alone, and he has needs that must be met.  His parents and wife have managed this care so far, but it isn’t sustainable, and arrangements for private home health care must be made.  There is an exorbitant cost for this service, it could be almost $6,000 a month, for just 8 hours per day.

Home Modifications. Derek also really needs home modifications and renovations to accommodate his disability and limited function.  Most importantly, he needs a walk-in shower installed.   This will come with one of the heftiest price tags of all.

Health care advocate. Derek’s complex diseases/illnesses now require the service of a medical doctor health care advocate to guide him through the complex medical system and attend appointments.  The cost of this is $250 per hour with an anticipated cost for the rest of the year of about $20,000.

Our goal, as friends of the Khouri family, is to raise $100,000 to help defray these ever-increasing expenses which health insurance will not cover. These are essential for Derek’s life and all levels of his care.  He has a challenging road ahead, but he has been a true warrior, and has been “Fighting his Fight” for too long.  Derek is a great guy, who is courageous and strong.  Please help Derek continue his fight, his hopes, and dreams…

Please share Derek’s story and this page.

If you are uncomfortable donating on-line, you can send a check made payable to the Derek Khouri Fund to 19 Barton Rd. Foxboro, MA 02035.

Derek’s wife, Maria Rougeau Khouri; his parents Michael and Valerie; and his brother, Adam, also ask that you keep Derek in your prayers. In addition, if you can provide additional advice, insights, or ideas, please contact the Khouri family.  Thank you very much!

https://www.facebook.com/valerie.khouri

https://www.facebook.com/mike.khouri.52

https://www.facebook.com/maria.rougeau