Story
My name is Riz and I am Ronald’s only child. I am creating this GoFundMe page with a heavy and humbled heart. My dad is 54 years old with so much to live for. He’s a loving husband, amazing father, and my 3 children will attest to him being the world’s greatest papa. Growing up, he has worked hard to give my mom and me the best life possible. Even now, when I have my own family, he still continues to give my children the best life without even being asked. So I want to do my best to get him all the support he needs. It has been such an emotional and scary three months for our family. We have been so thankful to wake up every morning without a phone call from the hospital giving us the worst-case scenario.
My dad just got his diagnosis 4 days ago through muscle biopsy – statin-associated autoimmune myositis. It is a very unfortunate and rare side effect of the statin medications, which are commonly used to help lower cholesterol. My dad has been on the medication for about four years now, so the diagnosis is a shock to us. He is currently admitted to GRMC’s ICU. He presented to the ER with full body muscle weakness (he couldn’t stand up on his own) and dysphagia that started at the end of March. When he was admitted, his CK (protein in blood they are using to monitor muscle breakdown) was at 56,000 along with electrolyte imbalances. They automatically suspected rhabdo and started flushing him with fluids along with dialysis. However, after 3 days, his CK levels were continuing to trend up and the physician was concerned this was beyond rhabdo, so they consulted their rheumatologist. When the rheumatologist was consulted, they started him on high-dose IV steroids for 4 days, which managed to trend down the numbers. He has received 2 rounds of IVIG and a round of rituximab along with prednisone 50 and with dialysis since being admitted. It’s safe to say that his CK is hovering in the 600s with a slight trend up without dialysis in just one month of treatments. However, the progressive disease and inflammation had caused significant damage that had affected his respiratory muscles, so he experienced respiratory failure early into admission and has been on a ventilator via trach. They have been attempting to wean him, but it looks like it’ll be a long road. He’s pretty much bedridden but can do slight movements with his extremities below the knees and elbows.
As a caregiver, a daughter, I feel like I was whiplashed because he was just fine 3 months ago and now we’re here. Although Guam has come a long way in terms of medical care, the island is still lacking other treatments and resources and probably has never encountered a severe case like my dad. His physicians, along with the specialty doctors onboard his case, have deemed him “stable for transport” and are recommending a treatment called plasmapheresis, which can remove antibodies from the body to give my dad the best chance of recovery. Because as long as he’s still in active flare-up, his muscles and body do not have the chance to recover. The medications are working, but it can only do so much because I’ve learned that immunosuppressants and immunoglobulins have schedules and are often given monthly to 6 months at a time.
We understand that this autoimmune disease is incurable, but it definitely is treatable to get my dad into remission. So my mom and I are asking for donations to help us medivac my dad to St. Luke’s Hospital in the Philippines to help him beat this rare disease and possibly get a better diagnosis to have the best chance of recovery. We understand that times are tough in this economy, so any amount will do and any share will help. All proceeds will go towards his treatment plan and to support his care off island.
Organizers :
Rizzalyn Alvarez is organizing this fundraiser.