Tony Lee's Celebration of Life and Family Support

My name is Michael and I am Tony Lee’s older brother. I am writing to you with a heavy heart about the passing of Tony at 4pm on December 17, 2024.

Tony initially had flu-like symptoms that seemed like they would resolve on their own, but they quickly worsened and it was determined that Tony required hospitalization. On July 27, 2024, Tony was admitted to Surrey Memorial Hospital with concerns of myocarditis/myopericarditis.

What seemed like a hospital stay that would last a few days, turned out to be 5 months. A diagnosis could not be reached for weeks until a doctor recognized his disease due to his prior experience. Tony was diagnosed with Adult Onset Stills Disease (AOSD), a condition that is closely related to rheumatoid arthritis that primarily affects the joints, but unfortunately for Tony, it affected his heart, lungs, kidneys, and liver.

Once Tony received the diagnosis, Tony was able to start treatment. Albeit delayed, we were glad there was some certainty in his condition and that initiating corticosteroids helped mitigate many of his symptoms. Unbeknownst to Tony and his family, this was only the beginning of the uphill battle that Tony would face for the subsequent months.

While there seemed to be a resolution to his myocarditis, Tony was diagnosed with a secondary disease: Hematophagocytic Lymphohistiocytosis (HLH). This is a condition that stems from his bone marrow and results in his inflammatory blood cells attacking his own body.

During his treatment of his myocarditis, Tony started exhibiting symptoms of pneumonia. He was still feverish and his bloodwork showed that there was still an underlying infection. This was when everyone realized that his condition was more complex than we initially thought. Tony started to develop blood clots that required blood thinners, but would cause internal bleeding in other parts of his body. His bleeding got so severe around his throat that he would require a tracheotomy, and has been on and off a ventilator throughout the remainder of his stay. This was the beginning of a flurry of complications that were unrelenting and ultimately took his life. Tony had many bleeding events that the doctors were unable to control, while suffering multiple infections simultaneously due to his lengthened hospital stay and immunocompromising medications for his AOSD and HLH. Tony had multiple total organ failures and was on continuous dialysis as well as an ostomy bag. It was a medical whack-a-mole where we would treat one complication and another would arise.

My parents would be by his bedside 24/7 taking shifts to make sure he didn’t feel alone. We’ve seen many of his friends come and visit so he knew they were rooting for him. Tony never lost hope until the very end and fought with everything he had. Every day was a battle and even though the outlook was grim, Tony was still able to smile and wave whenever we came to visit. Our family is devastated by the outcome and Tony was taken from us way too soon. We have so many questions and hypotheticals that we’ll never have the answer to, and our road to healing will not be easy.

With Tony’s funeral expenses and estate management, we are looking to raise $15,000 to alleviate as much burden on our family as much as possible. Any donation of any amount will be greatly appreciated.