On February 27th, 2017, Steve Wright was diagnosed with an extremely rare disease called DPPX Autoimmune Encephalitis. This disease effects the central nervous system and is caused by antibodies attacking the brain.

After suffering from an undiagnosed illness for over 3 years, doctors in Canandaigua had given up on Steve. After countless blood tests, body scans, endoscopies, colonoscopies, and every other invasive test imaginable, medical professionals had no answers. They labeled it “depression” and refused to refer Steve to the experts at Cleveland Clinic. He continued to undergo many tests during this time, but unfortunately not the correct ones.

It has been so hard to watch Steve’s drastic decline over the last 3 years. In February 2014, he began to lose more and more weight. Most of the food he ate he couldn’t keep down. In the first 3 months he lost a staggering 50 pounds. The person we all knew started falling apart piece by piece. Because he couldn’t absorb the nutrients in food he became deficient in all levels of vitamins and minerals. Steve suffered with joint paint, Insomnia, Nystagmus, memory loss, depressed consciousness, abnormal movements and trouble walking. He faded from a healthy 174 pounds to a mere 112 pounds. All this caused him to lose his ability to drive and work. It was a sad day when Steve, who had worked so hard to become the shop foreman of P&J Sheet Metal, had to leave the welding job he loved. The medical bills kept piling up with only his wife, Lori’s income, to support the family.  

In desperation, the family decided that enough was enough and checked him into the emergency department at Cleveland Clinic on December 30th, 2016. At first, they turned him away. But, by some miracle, the clinic informed Steve that he was entitled to an appointment with a doctor in their facility the following day. Not knowing what department to see, he met with a weight loss specialist. This was the doctor that changed everything.

After multiple visits to the Cleveland Clinic and more invasive tests, it was the Spinal Tap procedure that provided the diagnosis. The news that doctors had finally figured out what was wrong was welcomed. The mysterious disease had a name. But the news wasn’t what we were all hoping and praying for.

DPPX is a disease so rare that only 39 cases have been reported in the United States. Cleveland Clinic has never seen a patient with DPPX and are treating it as they would treat most other autoimmune diseases. The prognosis was far from what we all had hoped for with only a 50/50 chance of recovery. Because the disease has gone undiagnosed and untreated for so long Steve’s odds are greatly reduced.

Steve is currently in Cleveland Clinic receiving treatment until March 18th, 2017. Ironically that day is his birthday. He has a team of 6 doctors overseeing his recovery. Their treatment plan is his last hope. It involves multiple rounds of plasma exchange, steroids, and antibiotics to counteract the antibodies that are attacking his system. Even if he is cured of the disease, it is not known how much of a recovery he will make neurologically.

In January of this year, Steve lost the medical insurance offered by his employer. After being out of work for over 2 years, they could no longer extend the coverage period. By switching to his wife’s insurance he has much less coverage. As if the previous 3 years of medical expenses weren’t enough, the bill for his stay at Cleveland Clinic will surely be astronomical. Any donations to help pay these bills for Steve are much appreciated.

Most of you know the kind of man Steve Wright is. The kind of man that could fix anything if you asked him to. The kind of man who would plow your driveway at 4am if you needed it. A man dedicated to his friends and family. Steve has always been a fighter and a hard worker, taking care of others. Let’s take care of him this time, for now is when he needs us the most.

 
Thank you!

Christmas 2011

Steve's 50th Bday (3-18-13)

April 2014

May 2015

Summer 2016