Lauren Santye was 18 years old when her mother Casey was diagnosed with amyotrophic lateral sclerosis (ALS). Unsure of what to think after she heard the news, she assumed that her life would be generally unaffected, and that she and her two siblings would have another 20+ years with their mom.
After Lauren moved into college for the first semester of her freshman year, her anxiety started to build as she learned of her mother’s progression from afar. Every time the phone would ring, she assumed that it was “the call,” and that she’d need to rush home.
In this video, Lauren takes viewers through the journey of the daughter of a parent with a rare disease.
Lauren Santye: Her first symptom was a weakness in her leg. My mom had taken walks with our dogs forever, and we live, kind of, on a mountain. So, my parents were taking a walk and, for the first time in her life, she was having difficulty getting up the hill. So, that was kind of like “Hey, this is strange. I should get this checked out.” So, this whole time, they were going through the process of trying to figure out what it was, and they were a little bit quiet about it because they didn’t want to freak (their kids out) if they didn’t know what it was yet.
When she was finally diagnosed, they told my sister. She had known what ALS was because her coworker’s father had just passed away from it 2 months prior. She was hysterical when they told her. When they told me, I didn’t know anything about ALS; I didn’t know what it was. My reaction was “Okay. Now we know what it is and we’re going to deal with this. She’ll have some difficulties, but she’s going to live for 20 years.” It didn’t really sink in until I started watching the disease progress.
Her disease progression was a little bit faster than some other patients, and she also chose not to be put on feeding tubes and not to have a tracheotomy. She felt it wasn’t a quality of life that she wanted to live, and she had lived a great life thus far. So, it pretty much began with her having trouble walking. I was 18 years old when she was diagnosed, and I was going off to college. I was about an hour and 15 minutes away. She was using a cane, then she was using a walker, and eventually she was put into a scooter wheelchair.
Then, eventually, when it really was progressed, they get into their big wheelchair and they basically move around like that. It was just really hard to watch her because I was away at school, so I was just hearing things through the phone. I was calling home, “How’s everything doing?” It was real anxiety producing, because every time I got a phone call, I was afraid it was the call “You have to come home. This is the end.” That was really tough on me.
Just watching her progress was more – like, you can read about it, but one you’re actually seeing it, it’s so much more devastating. She was my mother, and I wanted to help her, but there was nothing I could do. That was really challenging.
We also had a live-in nurse who was staying to help my dad. They have to do things even just like lifting them up, helping them do everyday things like shower and go to the bathroom, which is also hard for the patient because you are this adult who has done things by yourself your entire life and now you can’t do anything and you need help with everything. There’s not really anymore privacy.
It was all pretty challenging for my family.
Every year, Lauren and her siblings host the “Casey Classic,” a Crossfit challenge where proceeds benefit the ALS Association Greater Philadelphia Chapter.
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