***UPDATE*** We have updated the total on this page to reflect expenses incurred thus far and more expenses we forsee to come while we are in Arkansas. Expenses we didn't consider are the accessible van we had to purchase to drive Jarrett there as he cannot sit to fly, and to drive Jarrett to and from the clinic daily. Daily homecare and living expenses were not budgeted in our original total.
In 2015, Jarrett Seck was a 20-year-old defensive linebacker for the Regina Thunder. He was attending the University of Regina to become a physiotherapist, as he was passionate about athletics both on and off the field.
Jarrett was injured during a game in September of 2015, causing pain in his left leg. He went from walking with crutches to having no function in his left leg within six months. His leg hurt to the touch, it would swell, turn all shades of red and purple, and even tremble.
On a scale of 1 to 10 Jarrett would rate his pain at a 9 or a 10 on the best of days. He was prescribed a concoction of medications, but nothing worked. He was in and out of the hospital with uncontrollable pain surges that wreaked havoc on his body. Because Jarrett is a determined athlete, he also spent long periods in Wascana Rehabilitation Centre where he attempted daily physio that would leave him in even worse pain.
In December of 2016
he was finally diagnosed with Complex Regional Pain Syndrome
from the left knee down. Complex Regional Pain Syndrome (CRPS) is a chronic pain condition that most often affects one or more limbs after an injury, beginning in one limb and eventually spreading to other areas of the body. It’s the most painful condition ever recorded. It is believed to be caused by damage or malfunction of the peripheral and central nervous systems. The cause is not definitively known and there is no cure.
CRPS sufferers describe “the worst pain ever inflicted on a human being,” “constant burning,” “bone crushing pain,” and have even called CRPS “the suicide disease.”
In layman’s terms, CRPS is a glitch in the nervous system that signals excruciating, debilitating pain to your brain for no apparent reason. CRPS can leave sufferers completely bedridden, paralyzed in pain and secluded from the world. Every case is different in terms of medications, surgeries, and therapies. Some people eventually find ways to manage their symptoms but still suffer with persistent pain every single day.
The standard pain scale is called the McGill pain scale, with pain ranging from 1 to 50. CRPS
positions firmly at the top
, above childbirth and amputation of a limb. In addition to being the most painful, CRPS also can last months or years, and in most cases pain is only reduced, never cured.
But Jarrett’s story doesn’t end with this devastating diagnosis. Things have continued to worsen. In 2017, the agonizing pain spread to his right leg
and left arm
leaving him paralyzed in three limbs
and in excruciating pain to the point that the slightest touch to his skin was unbearable.
In July, doctors surgically implanted a modular stimulator in his spine hoping it would block some of the painful nerve activity. It has been 6 weeks now since the implant. Doctors have weaned him off some medications such as the ketamine and methadone, as they are dangerous over the long term, but there has been no notable improvement. In the end of August, they implanted a pain pump in hopes of finding some pain relief, but Jarrett’s pain levels still sit at 11 or 12 on a scale of 1 to 10.
He describes his pain as “constantly burning, as if you were on fire with your muscles being torn and bones being crushed, while being stabbed with shards of cold glass. It continues 24/7 and it has no end”
He lays in bed all day, every day, counting down the minutes. High stimulus environments have become too much for Jarrett. Bright lights or loud noises could elevate the already unbearable pain. He cannot sleep and if he does manage to get a couple of hours, he often wakes with higher pain levels for the rest of the day or week.
Jarrette says, “It is the worst thing I could imagine. This is possibly the most cruel and inhumane disease that can happen to anyone at any given moment. I would not wish it upon anyone. Unfortunately, there hasn’t been a lot of research done on this condition due to the complexity of the central nervous system. It is hard for people to understand.”
At home, we have exhausted the treatments that are available to us and the doctors have told us they have nothing more to try. So, we are seeking treatments outside of Regina and Canada. Here is what we will be raising funds for:
1. Body in Mind Chiropractic Therapy
Session Cost around $90.00 per 45-minutes recommended twice a day. Three months total cost $3,000
.2. The Neurological Relief Centre
The Neurological Relief Clinic is in Fayette, Arkansas focuses on restoring the balance to the Central Nervous System, which assists the body with healing from within.
The treatment will be 10 weeks or longer, which may be the case for Jarrett considering his severe condition. Tentatively the first treatment date is January 29, 2018. It will cost approximately $35,000 USD ($43,000 CAD)
for the treatment alone.3.
The remaining $35,000
will go to accommodations, travel insurance, nursing, medical equipment needed for transportation, and transportation itself - which is our biggest concern. Jarrett is unable to travel by air ambulance due to the expense.Grant Total: $81,000
Any remanding funds will go towards other future treatments and long-term care for Jarrett. We are still looking at other therapies in the meantime.
We are willing to try anything because his current condition offers him virtually no quality of life. We can see the toll it takes on him daily.
We would appreciate any help or support to try and find Jarrett some pain relief in this battle with CRPS. Anything you can do would mean everything to us.
Please help make this possible!