Don’t limit yourself. Don’t let something like this define you.
The following article was first published in our March 2023 Quarterly Newsletter
Taylor Dahley is Heather’s Smith’s second son. Heather and her husband are the founders of SCID Angels For Life. Her first son, Brandon, came down with his first cold at 6 months old. The year was 1993 and there was no newborn screening test for SCID at the time. Heather had no warning that a simple cold might be life threatening for Brandon. Despite being admitted to the hospital, Brandon did not respond to treatment and was transferred from hospital to hospital while the doctors looked for answers. By the time the doctors came up with a “preliminary” diagnosis of SCID, Brandon was on ECMO, a heart/lung bypass machine, and was too sick to be considered for a bone marrow transplant. Three and a half weeks after first becoming ill he passed away from what was later learned to be X-linked SCID.
The loss of Brandon’s life, however, gave Taylor a chance at life. Not only did Heather now know that her next baby might be affected by SCID she had learned to question what options for treatment might be available. At only 10 weeks into her second pregnancy, Taylor was tested by CVS (chorionic villi sampling). The next day Heather learned that she was carrying a boy. It took another 3 weeks before Dr. Jennifer Puck delivered the news that Taylor also had X-linked SCID. Through her research, Heather located a doctor who was ready to perform the first in utero stem cell transplant on a human fetus. Taylor’s father donated the cells which were delivered to Taylor in utero through three separate transplants (injections). A more detailed version of the story of Taylor and Brandon can be found on the SCID Angels website.
Recently, Barb Ballard from SCID Angels met with Taylor to learn his feelings on being a SCID patient and to learn how SCID affects him today.
- Barb: Taylor Can you tell us a little about yourself? How old are you and can you give us a brief history of your medical journey, including your form of SCID?
- Taylor: I’m 27 years old. I have X-linked SCID. I’ve obviously, had it for forever. I was diagnosed before I was born. I guess my medical journey was very eventful. My first four-ish years of my life they didn’t really quite know what was going to happen, and then it started progressing along, and started getting better as the years went on, but pretty much until I was 10 or 12, there were a lot of doctor’s visits and stuff. Then, around 12-13, I started getting a lot healthier and stopped getting sick quite as much. We also moved down to Florida, so that probably helped quite a bit. And after that it was pretty much going to the doctor whenever they basically needed to see me. Later, around 21-22, my numbers started declining, and that’s when we started talking to NIH (The National Institutes of Health) about doing gene therapy. Then, about six months later after we started those talks, I did apheresis, and six months after that I was doing gene therapy. So, I was 22-23 years old at the time.
- Barb: You said you started getting healthier around 12 years old. Besides moving to Florida, do you have any idea what made a difference for you?
Taylor: Not for sure. But, I was always playing sports and really active. I think I just started maybe getting exposed to more stuff in low doses so I wouldn’t get sick. I think it just helped me get a little bit more prepared for it, whereas I was kind of- I don’t want to say isolated before, but I was definitely more cautious. And as I got older, more teenage years, I kinda just threw that caution to the wayside, if you will.
Barb: So, tell us a little bit about where you are in your life. You said you’re 27. Where did you go to school? What degrees do you hold? What type of work are you doing now?
- Taylor: I have a Bachelors in Environmental Science from the University of South Florida. What that means is, basically a really fancy farmer. I can do quite a lot of different things with that, climate change and all kinds of different stuff, but what I’ve chosen to do is go into the Ag industry. I started out running a strawberry farm, and then I transitioned after that into agriculture, doing different lettuces and things like that. I’m still doing that currently. So, it’s paid off well. It wasn’t something I was sure I wanted to get into. I actually changed my major four times. So, it’s never too late.
- Barb: So, are you living independently now.
- Taylor: Yes, I am living independently. I have my own place here in St. Pete, and I actually have been living independently since I left for college when I was 18, just in dorms and apartments and stuff.
- Barb: Tell us, what is your earliest memory regarding anything medical?
- Taylor: The earliest memory, I was probably four, and it was an eye surgery. That’s the first thing I really remember. I remember being in doctors’ offices and stuff, getting poked and prodded and whatnot. The first thing I really remember is going in for eye surgeries. The recovery after that kinda sucks, and it isn’t the most comfortable thing.
- Barb: Tell us more about your eye surgery. Is this related to you having SCID?
- Taylor: As far as I know, no. I just have really bad eyesight. Unfortunately, I did not get the correct genes there. But I’ve had five different eye surgeries, the most recent being when I was 15. Now I’m just waiting for my eyes to settle out, and I’ll probably get LASIK. Hopefully that will be the end of it.
- Barb: At what age did you realize that you might have restrictions that most of your friends didn’t have? And did that seem strange to you?
- Taylor: So, I guess, maybe seven or eight, when you really start hanging out with people, and your parents might not be there.You start hanging out with kids around the neighborhood and stuff. I always knew I was kind of different, but I didn’t really see it as restrictions. There was nothing I really couldn’t do. It was more just like, if somebody was sick I couldn’t hang out with them. There was nothing like, ‘if they’re doing this, you can’t’…. It was more like, ‘if you’re sick, you can’t hang out with them or be near them for a while’.
- Barb: Were you on IgG at the time?
- Taylor: Yeah. I’ve been on that since I was three.
- Barb: Did you realize your friend didn’t have to do that?
- Taylor: Yeah. I always knew that.
- Barb: You always knew that that was different?
- Taylor: I mean, yeah. From the time I started hanging out with people, I realized that most people don’t have to do that.
- Barb: So, did that bother you, that you had to do that?
- Taylor: Not really. It was just an extra thing. But I didn’t really ever tell anybody about it. I would just get it done and get on with my day or my life.
- Barb: We have a lot of parents who have problems with the needle sticks for their kids. Do you have any suggestions for them?
- Taylor: Like, are they doing it, or they’re having a nurse do it, and they can’t find the vein?
- Barb: Well, it could be the nurse doing it, or it could be SubQ. Just fear of needles, especially with younger kids.
- Taylor: Okay. When you’re little- I get being afraid. When you’re little, you can use a really little needle. I mean, it doesn’t hurt. I would just drink a lot of water. I’ve been blessed with really good veins, so I’ve never had that issue. If you drink a lot of water, that definitely helps. I mean, they make all kinds of numbing stuff that you can use, if you wanna try that. It definitely works.
- Barb: This question doesn’t have to be anything medical, but it can be. What do you feel was the most significant event in your life to date?
- Taylor: I don’t know. I think most significant to date would probably be graduating college. Graduating high school was good, but then you’re always thinking ahead to college, so you’re not really completely on your own yet. You’re out in the world, but you can still fall back on your parents, and you’re still trying to figure it out. But once you graduate college, there’s this unknown expectation, like, okay, now you have to go get a job and you have to do all this stuff. It was right around this time that I ended up doing gene therapy, so it was just kind of weird.
- Barb: Okay. Did it scare you that you had to worry about your medical concerns on your own, at that point?
- Taylor: No, it didn’t. Obviously, I’ve always been present when I’m talking to the doctors and my mom is talking to my doctors, so I know the lingo, I know what different stuff means. And my mom did a good job of at least exposing me to it. Maybe not giving me full responsibility, but at least exposing me to it, explaining what was going on. And if doctors would ask questions, she made sure – or at least she tried her best to make sure I answered them, rather than her answering them for me.
- Barb: It’s good that you feel like you were able to step up and take care of your own medical questions and concerns.
- Taylor: I mean, it’s definitely a lot. I have a lot of respect for what she did, especially at an early age, when I probably wasn’t the easiest- I was running around crazy, I wasn’t mature, so I probably wasn’t the easiest.
- Barb: I know a lot of SCID parents have a hard time deciding when to give up any of that control. They’ve had to have such intense control for years.
- Taylor: As long as you’ve shown them what’s going on, and it’s not just like you throw it all in their face, it won’t be a big deal. They’re picking up more than you think they are.
- Barb: Was there a time in your life that you just wanted to make all the medical parts just go away?
- Taylor: Yeah. Pretty much all of it, pretty much the whole time. But it really became prevalent when I was 16, 17, 18, junior and senior years of high school, and then graduating, going into college, I just didn’t want to have to worry about that.
- Barb: So, you’ve obviously changed from not wanting to worry about your health, to being able to manage your own medical concerns. Did anything significant occur that made that change for you?
- Taylor: Yeah. I did gene therapy, and to be honest with you, I don’t have many concerns other than making sure my numbers are okay, and that my platelets are okay. Some of the side effects from gene therapy, making sure all that’s in check. Other than that, I really don’t have to go to doctors very often, or go in for anything special too much.
- Barb: So, does SCID play a major or minor role in your life on a daily basis now?
- Taylor: Extremely minor, at this point.
- Barb: I think that will make a lot of parents feel really good to hear that.
- Taylor: To be honest with you, I don’t think about it unless you or somebody asks me a question. It does not come up in my mind at all.
- Barb: When you make important decisions in your life, does the fact that you have SCID have any part in it?
- Taylor: It does, for sure. But, It’s definitely not the first thing I think of. It’s like a tertiary thought. So, for instance, I’m in the middle of a job interview process for a job out in Texas that’s near Dallas and Houston, and there are very good doctors in both those cities, so I’m not worried about that. But if I was to move to somewhere, like Wyoming or Montana, it would definitely cross my mind that that might not be the easiest bridge to cross.
- Barb: One of the other questions that I wanted to ask you is whenever my son was in the hospital, they brought in all the residents to meet him. A lot of times, they would have never seen a SCID patient. Did that happen to you a lot? How did it make you feel?
- Taylor: Pretty much every time, yeah. I got used to it. I didn’t mind. They usually just sat back, observed and listened. It really wasn’t a big deal, as long as you don’t mind having an extra person in the room that you don’t know at all.
- Barb: Did you feel any responsibility to teach them anything?
- Taylor: Personally, no. I never said anything. I just let the doctor- if they wanted to teach them something, they could teach them something. I didn’t feel the need to say anything to them.
- Barb: How did it make you feel when they brought in med students or residents in?
- Taylor: At first maybe kind of uncomfortable. But like I said, I got used to it. It’s still somebody you don’t know at all in a doctor’s office setting. You’re not super comfortable in the first place. They’re always nice, they’re always young, they’re always roughly- I mean, once I was in college, they were my age. It was a little bit different then. So, I could talk to them and have general conversations. It’s a little different when you’re a little kid and you don’t have anything to say.
- Barb: What about your particular history? The fact that you had an in utero transplant is very different from most of the experiences of other SCID patients. Do you think that played a big part in why they wanted to meet you, or why they wanted to have the residents meet you?
- Taylor: Yes. So, SCID is a different thing, and an in utero bone marrow transplant is- it’s rare, and then ultra rare. So, it definitely is an interesting topic. When they tell the fellow, whoever they bring in, it’s like, ‘oh yeah, SCID, that’s cool.’ And then, he’s also had an in utero bone marrow transplant, and it’s like, ‘oh, wow, that’s really cool.
- Barb: So, do you see yourself teaching people about this in the future at all, when you’re in there on your own, without a parent to tell the story?
- Taylor: I don’t know. I won’t say yes or no. It just depends. To be honest with you, I don’t really like talking about myself. I don’t mind answering questions, but I just don’t really like talking about myself unless somebody else brings it up. To me, it’s just my life. It’s not special, it’s just my life. There’s nothing, really, about me. I’m not really that interesting. I don’t know.
- Barb: Well, a lot of people think you are. Is there anything else you’d like to share? Anything that I didn’t ask that you think people would be interested in learning about you, whether it’s about SCID or not?
- Taylor: If this is going out to patients – don’t limit yourself. Don’t let something like this define you. Whatever you’ve got going on, I was told many times, and as recently as three or four years ago, before I had my gene therapy, that I was gonna need IgG for the rest of my life, and I just never believed that, I didn’t take that as an answer. We live in a time where medical stuff is changing so fast, anything can happen.
- Barb: That’s a great attitude. That’s a good statement for families to remember. I think they’ll like that. Well, I think that wraps up all of our questions. Thank you so much for taking the time to sit down with me today and chat.