Visiting her grandparents’ home today is a much different experience for freshman Mackenzie Silva than it was just a couple of years ago. Medical equipment has slowly migrated into the various rooms, and though smiling faces still look up at her from old family photos, some of them have become hard for her to look at. It has been more than 21 years since Silva’s grandfather, Dennis Silva, got diagnosed with a rare genetic disease called Cerebral Autosomal Dominant Arteriopathy with Subcortical Infarcts and Leukoencephalopathy (CADASIL), which affects the blood vessels in his brain. Dennis has been receiving hospice care for the past year as his condition has deteriorated. 

Before Silva was born, Dennis was diagnosed with CADASIL in December of 2005. CADASIL is a rare terminal illness affecting .002 percent of the population, and the condition’s age of onset and severity can be drastically different for each person. CADASIL created a wall of blood cells in Dennis’s brain, which slowly stops the connection between his brain and his body.

“Some days are really good, and he’ll have conversations with me, but other days, he just sleeps all day,” Silva said. “It’s hard to see him like that, but he still jokes around and has humor. Especially as he’s been put on hospice, we’ve all spent more time together because we’ve realized how precious life is and how little time we all have left.”

Many of Silva’s childhood memories involve her grandfather. However, Silva’s younger sister is nine years old. She has had much less time than her siblings to make memories with her grandfather, especially as his condition has progressed and caused dementia. As she grows up, Silva hopes to tell her sister stories about Dennis so that she can remember how he used to be when he was healthier. 

“I just want her to remember him smiling, laughing and joking around rather than sleeping and sick. He would get down and play with us even though it was hard for him. It’s hard now [to make memories with him] because of the condition he’s in, but when I was younger, he was the biggest people-person I’d ever met. Everybody knew him. When you’re younger, you don’t pay attention to that stuff. But looking back now, he had a lot of friends, and he still does,” Silva said. “We used to go to the train store a lot, and my grandma would tell him, ‘don’t buy a bunch of candy,’ and he [still got us] candy and root beer and took us to McDonald’s after. It was the funnest thing ever.”

Dennis suffered his first major stroke just two months after he was diagnosed. Over time, the strokes have caused his body to start shaking, which prevents him from writing and walking. Dennis uses equipment like a catheter and a geriatric chair to make his daily life easier.

“When I was eight, he had a stroke at a restaurant. He was in the bathroom, and they didn’t know what had happened. He was lying on the floor, and the ambulance had to come. It was a really scary thing, and I didn’t know at the time how bad it was,” Silva said. “A couple of times, he’s fallen, and my grandma couldn’t get him up. It would be in the middle of the night, and my parents would have to go over.”

Silva has never been present for Dennis’ worst strokes, but her parents have had to leave to care for  him during worst-case scenarios. Dennis’s health severely deteriorated before he was put on hospice, leaving Silva fearing for his life.

“I didn’t know what was going on [before he was put on hospice], but Poppa wasn’t doing well. It was really scary because I didn’t know what to tell people. I didn’t know if he was going to die. He was okay, but at the same time, it’s so scary that it can happen any second where I could get a text,” Silva said. “It goes towards everyone. Tell the people who you love that you love them and appreciate them. I could be better at that, and the knowledge that anything can happen helps me do that.” 

During the pandemic, Silva’s family struggled with knowing when to see Dennis. Their main priority was keeping him healthy and safe, and especially in the recent weeks, they have had more opportunities to see him. 

“We want to be together as a family, but we also want everybody to be safe. Some of his friends, who I know he would be there for, don’t like seeing him in his condition. It hurts knowing that he was the guy who was there for everyone and took in everyone, [regardless] of race or gender,” Silva said. “I didn’t know the severity of what he did for other people, and once I learned that, I had so much more appreciation for him. I look up to that a lot, and I strive to be that person.” 

CADASIL is a genetic disease, which means that Dennis likely inherited it from his father and gave Silva’s dad a 50 percent chance of also having the disease. Since the age of onset varies drastically from patient to patient, there’s no way of knowing if or when Silva’s dad will show symptoms. However, if he does develop symptoms, Silva and her siblings also have a 50 percent chance of having CADASIL. 

“It’s scary, but I don’t want to think about it until I know for sure that [my dad] has it. I don’t want to stress about something that doesn’t happen,” Silva said. “We don’t like talking about it a lot. We all knew the general idea of what would happen, and we’ve all come to terms with it. It’s hard looking back on pictures because he looks healthy, and now he’s lost a lot of weight. He just looks sicker and less healthy.”

Due to his dementia, there are days when Dennis struggles to remember. But according to Silva, he is always happy to see his family and never fails to smile when her older brother comes home from college in Provo, Utah. Additionally, Silva and her family are Mormons, and her religious beliefs have influenced how she copes.

“We believe that there is a life after death and that we will all return and that families can be together forever. I know there are a lot of people who don’t know what happens after death, and there are a lot of different opinions on it, but for me, the knowledge of this has helped me. Knowing that when he does pass away and when we do see him again, that he’ll be healthy has helped us,” Silva said. “There is a greater purpose for everything. Everything happens for a reason, and even though it may be hard at the time, you can learn and grow from it.”

Silva’s paternal grandfather isn’t the only struggling loved one in her life. Her other grandfather, who lives on a farm in New Jersey, got diagnosed with bone cancer a little under two years ago. He had been healthy and working until that point, but unfortunately, the cancer treatment didn’t work and forced him to retire.

“We’re just taking it as it goes. We don’t know how long he has or what’s going to happen, and it’s scary,” Silva said. “I cope through humor, which probably isn’t the best way to do it. I joke that both of my grandpas are dying. I know it’s not funny, but people don’t understand the severity of it or how hard it is to see a person you love going through something so terrible.”

Silva’s paternal family is also spread out across the country, from Calif. to Ill. They have family reunions every couple of years, and according to Silva, her grandpa’s disease has helped bring them closer together.

“When we’re all together, and the grandchildren are together, it makes me realize how thankful I am for our family. I know a lot of people don’t have a close family bond like we do when we’re all joking around and Poppa’s happy,” Silva said. “We were going through our family pictures, and it was so crazy to see everybody happy and healthy. I want my family to be like that, to be healthy and to love each other. The relationships that my dad and his siblings have and me and my cousins have are what I want my children to have too.”

Silva believes that raising awareness for diseases, especially rare ones like CADASIL, can do the most to help families like hers. Besides her own family, she doesn’t know anyone with CADASIL or anyone who has even heard of CADASIL. Silva says she has learned a lot about CADASIL and other diseases from TikTok. She believes that social media platforms are an excellent way to raise awareness in the younger population.

“People don’t realize how challenging [having a sick family member] is. I love my Poppa so much, and I love seeing him, but at the end of the day, when I go home, I cry about my [situation] because it’s so hard seeing the progression of someone getting worse and worse,” Silva said. “Terminal illnesses are so challenging because I want there to be a cure, but there just isn’t. Raising awareness for these diseases and what you can do and learning how to talk to someone can help.”

As for right now, Silva is taking it one step at a time.  Along with balancing school, softball tryouts and lacrosse, she’s trying to spend more time with her grandfather. After high school, she hopes to become a pediatric oncologist nurse, which has been her dream since middle school after losing a friend to cancer. 

“[My Poppa] was the ideal person that I would want to become. [I just want to say] how amazing of a person my Poppa is in the times that we do see him, and his humor comes out. He loved everyone, and he served everyone. I know it’s easier said than done, but if everyone strived to become like him, the world would be such a happier place. I love him for [teaching me] that,” Silva said.