Support Ben's Recovery from a Rare Condition ODS

[See the update section for his progress]

Summary 

• What: My spouse Ben (40 years old) was diagnosed with a very rare syndrome called Osmotic Demyelination -  He lost his speech, motor skills and had excruciating pain described as knife stabbing all over his left body. 
  
• Why:  Ben became severely dehydrated after catching COVID (while being triple vaccinated). His sodium levels were corrected too rapidly at the emergency which led to this syndrome. He was in the ICU for over 20+ days and within the hospital for over 2 months (and still here).
• What we Need: Given the rarity of the syndrome, Ben doesn’t fit in the traditional buckets of rehab (stroke patients, the elderly, accidents). While he is showing immense improvement he currently needs intense physiotherapy and speech language pathology, as well as special equipment to aid in his day to day.  The public health system isn’t equipped to handle a patient like Ben under an urgent need for rehab.  Insurance only covers a fraction of the expenses which add up very quickly. Physiotherapy as an example is required at minimum 2 hours a day every day. The funds will help us get what Ben needs while fast tracking his recovery. 

Ben’s Detailed Story

On June 25th 2022 my 40-year-old spouse Ben went to the hospital feeling ill. Although he had been triple-vaccinated against COVID, the illness got him severely dehydrated.

He was treated that evening and his situation moderately improved over the first 24 hours, until suddenly, he started to decline again. He became drowsy, slurred his speech, and had increasing difficulty swallowing and moving his upper limbs. He ended up getting discharged a few days later with the doctors believing the symptoms would improve.

Ultimately the following day I had to bring him to another hospital as he quickly deteriorated again. He was rushed to the ICU where he spent the next couple of weeks. Upon intake, the onsite neurologists and staff doctors diagnosed Ben with osmotic demyelination syndrome (ODS / extrapontine myelinolysis) having been caused by a rapid sodium correction during the initial hospitalization. Complications and his health deteriorated significantly over these weeks with many signalling that due to the lack of treatments for this rare syndrome there wasn’t going to be much they could do other than pray. Ben ended up losing his speech, ability to swallow, became quadriplegic and lost all facial expressions and emotions. After a few days, he ended up going into intense tremors and sweats which would persist the entire day.

At 32 years old, I would never have thought that I would be in a situation where the love of my life, my soul mate, would be lost at such a young age. The intense anxiety, sleepless nights and the true unknown were just some of the emotions and feelings that I had to live through. I wasn’t going to give up on him, but I knew that I would have to take matters into my own hands; something that I didn’t know if I would have the strength to do. We spent every day, 24 hours, by his side even while he was barely conscious. I knew it was what I had to do to help. I would spend every waking moment researching and contemplating what the next steps could be, while the medical evidence of any recovery was severely lacking. The immense pain that filled my days was taxing, but I would take any small improvement such as his ability to open his eyes or twinkle his fingers as hope and that would fuel myself to continue.

After significant research and the support of the medical staff within the ICU, I managed to convince them to attempt experimental treatments, notably IVIG while attempting to find another medical center which would accept to perform a potentially life-saving treatment called plasmapheresis. There was no solid evidence for either, but Ben was worth saving and anything would be better than nothing. After 16 days in the ICU, while still having the same symptoms as above, we found a center that would perform the plasma treatment.

Since intake at the new center for plasma treatments, Ben has shown his strength and determination. On July 17th, he began his new treatments and by July 24th he could voice a few words, albeit not loud enough for us to properly understand. Communication was very difficult, however we managed to get by using finger alphabet boards and pictures. Things were looking positive, however on July 25th Ben ended up going into massive spasms that would last many hours which took away any speech he had built up and left him in excruciating pain that no medications could control. At this point Ben would sleep 30-60 mins a night, but the pain removed any ability to sleep.

Being by his bedside became even harder. Emotions were running strong, but fatigue and helplessness started to overcome me. Why I would ask. Ben didn’t deserve any of this and had so much love and generosity to give to everyone that would cross his path. But I had made a promise to him not ever to leave him and continue to fight, amidst all odds.

Slowly as the days went on, his pain subsided. Finally, as of August 15th his pain became manageable, and Ben regained his speech and motor skills of his upper limbs. As of today, Ben is making remarkable progress which goes above and beyond anyone’s wildest expectations however we still have a way to go to recovery. Notably, Ben still can’t swallow nor walk, however the doctors believe that intense rehabilitation will allow him to regain these skills.

Unfortunately, his case is so rare that there isn’t any adapted help and programs for Ben within our public health system. Ben doesn’t fit into a traditional bucket and thus we are left scrambling with difficulties securing funds from insurance to cover items and the therapy he needs to help with his recovery such as a stairlift, specialized wheelchairs, physiotherapy and speech language therapy, just to name a few. Most services offered are adapted for individuals suffering a stroke or for the elderly, which is not Ben’s case.

From our research, there is a tight window to allow him to recover completely, something called neuroplasticity (the ability for the brain to rewire itself). As such, we want to get the best care possible without delay to help, which means going private without any financial coverage. As it stands, Ben will need at least 2 hours a day of each professional with countless exercises he must perform.

We are asking for any support to help Ben get the treatments and services he will need to improve, and for finances to be able to manage rehabilitation equipment and living expenses moving forward. We are so grateful for your support, and any little bit helps! Whether you can spare funds or not, we ask that you continue to pray hard for his recovery.

Thank you in advance for any support, be it financial or spiritual.