My name is Shelby, and my parents are Rene and Lori. I am creating this GoFundMe to support them. My dad, Rene, is currently hospitalized in the ICU due to severe symptoms of his autoimmune disease, dermatomyositis. A team of doctors is working to treat him, but it has been an incredibly challenging time.

My dad and mom have been together 40 years, married for 38, and have three children; myself, my older brother Matthew, and my younger brother Brady.

Rene loves gardening, birds, trains, driving, history, San Francisco, and sports. Just a few months ago we would find him planting seedlings to grow a new crop of flowers in our yard, or refilling the bird feeders so he could see his feathered friends. He watches every sport imaginable with Brady and Matthew, and he loves the A’s, SF Giants, 49ers, and Warriors.

Rene has worked at a neighborhood hardware store in San Francisco since 1989. His passion for others and being a helpful part of this world has made it a great career for him. He loves his job and the community there and it has been very hard for him to not be at work.

My dad has always been a hard-working and active person. Rene is used to doing things for himself, others, and because it needed to be done. He has remained sharp and active, saying he needed to make sure he was doing what he could for his health and well-being. For years, he rode his bike to work. When he moved in the mid-2000's and the ride to work was too far, he started taking rides around the neighborhood. In recent years, Rene would take a daily walk to make sure he continued to stay active outside of work.

My dad Rene was diagnosed with dermatomyositis in July 2023. Dermatomyositis is a very rare autoimmune disease that causes rashes and muscle weakness. At the time, he had a red rash on his neck and hands, and was having trouble lifting his arms. His doctors came to this diagnosis through blood tests and his symptoms. Rene began treatment, taking steroids and other medication, including immunosuppressants, to treat it.

Since that diagnosis, his symptoms progressed. Rene was working until September, then he had to go on disability. His leg, arm, and hand muscles had weakened so he was not able to drive. This marked a huge loss of independence for him. He hoped a month or so of rest and treatment would support his recovery and he would be back at work. That did not happen. On November 2nd 2023, my dad and I celebrated our birthday. I was born on my dad’s 40th birthday, and he has always told me that I am the best birthday gift he’s ever gotten. He was able to stand, walk, smile, and hug me at that time.

The effects of the immunosuppressant medication Rene uses can take months to kick in, so we expected to have to wait to see results. Unfortunately, we are still waiting.

In January 2024, Rene’s muscle weakness continued to progress. One day, he was getting ready to go to the hospital for routine blood work, and tripped and fell, bumping his head. He had to go to the ER to ensure he was safe because he takes a blood thinner. At the ER, the doctors found out that he had RSV and pneumonia, and he was admitted to the hospital. Our family felt relieved that there was an explanation for his fatigue and weakness, and after about a week, he was discharged. By that point, Rene was too weak to stand on his own, so the hospital arranged ambulance transport home.

At home, Lori, Matthew, and Brady provided around the clock care for Rene. I live in Marin, but came as often as I could to support my family. After a week or so, we noticed huge changes in his ability. Where Rene used to be able to stand up with support and feed himself, he no longer could. During this time, Rene was being visited at home by a home health nurse, along with a speech therapist, occupational therapist, and physical therapist. This team worked with him to try to strengthen his muscles, especially his throat muscles. His ability to swallow greatly decreased, and this affected his capacity to take his immunosuppressant medicine used to treat the dermatomyositis.

My mom Lori made the decision to take my dad back to the ER, after recognizing that he was not taking in the necessary food, water, and medications. Rene was hospitalized a second time. He had to have a feeding tube inserted, in order for him to receive nutrition. He was visited regularly by his rheumatologist, a key person in his diagnosis and care plan. His needs were higher, and we helped him blow his nose, move his limbs, and prop his body in place with pillows. At this point, the only movement he had left was wiggling his toes, moving his hands, and some slight movement in lifting and turning his neck. This remains the case at the present. Imagining being in his position is overwhelming. Can you imagine losing all ability to move over just two months? This is Rene’s reality.

After 17 days in the hospital, even with a decline in his condition, Rene was discharged and transported to a skilled nursing facility, in which he remained for 3 ½ days before requesting they transport him to the emergency room. He was having challenges breathing, and due to his immobility, often needed assistance from staff. One night, after he had called for help a few times, one of the staff members told him they had other patients to care for, and they couldn’t keep coming back to him. He told them to transfer him to the emergency room, because he wanted to be safe.

Rene spent 14 hours in the emergency room before being admitted to the hospital. With visits from his longtime ENT (ear, nose, and throat) doctor, he felt reassured that she would get to the bottom of things. After five days in the hospital, Rene started experiencing increased difficulty breathing. His ENT doctor consulted with a throat specialist who used a scope to check out his throat. There were no visible blockages or issues, which to Rene was terrible news. His breathing muscles were starting to be more affected by the dermatomyositis. His doctor expressed concern about his safety. It was decided that he would be transferred to the ICU for a higher level of care.

After barely 24 hours in the ICU, breathing continued to be a challenge. Rene’s care team and his family decided the safest option for him was to be intubated, so that they could ensure his airway was open and he would breathe safely. He was scheduled for a tracheostomy on March 27th for a more permanent solution for safe breathing. On April 3rd, he had further surgery to insert a feeding tube directly into his stomach. Both procedures went well. He is undergoing further testing to determine the best course of treatment moving forward.

Throughout this nightmare, my dad Rene has remained adamant about being an advocate for people with autoimmune conditions, especially dermatomyositis. Under Rene’s approval and encouragement, medical students have come in with doctors to learn about his condition, and he has participated in studies in the hospitals in order to help grow people’s knowledge about this disease. Rene and Lori want nothing more than other people with rare medical conditions to be met with compassion, rather than frustration or irritation. Throughout his hospital stays, Rene has had to repeatedly advocate for his needs to be met, due to the rareness of his condition. Staff members have said to his face that he is hard to take care of, that they can’t hurt themselves trying to lift him, or that he needs to “just try” when they want him to move. I can promise them and you that if my dad could move, he would. He wants nothing more than to be able to function again like he used to.

The money from this GoFundMe will help my parents greatly. It will primarily go towards medical expenses, living expenses, and bills. With Rene on disability, he is receiving 60% of his income. With the level of support and care he needs from his wife, Lori, she will be taking leave as well. They will not have enough income to cover their expenses. The Bay Area is expensive, and much of my parents income has always gone to rent. On top of that are phone bills, car insurance, PG&E, groceries, and other bills.

My mom has been very concerned about the possibility that Rene will get discharged to a nursing facility that does not meet his needs, which is what happened before. Therefore a goal of mine is to raise as much money as possible (on top of the previously stated expenses) in order to be able to pay for a home health aid or private nurse to care for my dad when he is ready to be discharged, so we can have him come back home. He has not been at home since February 26th, the day he was admitted to the hospital for the second time.

The costs for a home health aide average about $35 an hour in California, which puts costs at $1,400 a week for 40 hours of care. This means it would cost $5,600 a month. I am estimating 40 hours of care a week so that my mom would be able to return to work full time and not worry about taking on all of my dad’s care herself. I am hopeful we can raise enough to cover 2 months of at home care at this rate, in addition to 2 months of rent and bills. If home health care does not end up being something that is required, all of the money will go towards paying the other expenses mentioned above.

The future is uncertain at this point. It is our hope that Rene will be able to come home, receive quality care, have ongoing treatment for his autoimmune condition, and steadily improve to the point where he will not need a home health aid. My dad Rene is the kind of person who worries about others' needs before his own. He hid the extent to which he was struggling after diagnosis from us so that we wouldn’t worry. He has told nurses in the hospital to get larger nurses to come help them so they wouldn’t get hurt moving him. When he was in the ICU, my dad told me and my mom that he was sorry about how this is all affecting us, once again thinking about others over himself. I want to be able to provide some reassurance and financial security to my parents during this time. This is the hardest thing we have ever had to face as a family, and any support will help. Thank you.