We Have a Lot of Hope - SCID Angels For Life Foundation

I wonder, “What if it doesn’t work?”

Barb: Hi Jason, do you mind answering a few questions for our newsletter?

Jason: Yeah, ok.

Barb: Do you feel like you get treated differently than your siblings?

Jason: Um, a little bit. It’s only for medical purposes. Otherwise, mom just treats us all the same. She yells at us like it’s the same.

Sy: When do you think you get treated differently though?

Jason: Oh, I get more snacks.

Sy: I’m always trying to beef him up because when he does get sick, he stops eating and will drop like three pounds in a day or two.

He also gets more electronics time.

Jason: Yeah, (during IgG infusions).

Barb: Are you excited that you have a new treatment option?

Jason: Yeah

Barb: Will you be going to NIH?

Jason: Yep

Barb: What is exciting or interesting to you?

Jason: I get to be away from my sister Emily.

Sy: Those two don’t get along. My theory is that when I was carrying them, Lauren had her own space, but Jason and Emily were duking it out from the beginning.

Barb: Do you know how gene therapy works?

Jason: Yeah

Barb: What do you hope to gain from the treatment?

Jason: I would say being away from my sister again, but something special is that it might cure me of SCID.

Barb: What does that mean to you. How will that change your life?

Jason: Not having the hassle of getting three needles poked into me every two weeks.

Barb: That’s a big deal.

Sy: Not having to take Septra?

Jason: Yes, and no blood tests.

Barb: Do you have any concerns about this new treatment?

Jason: I wonder, “What if it doesn’t work?”

Barb: What do you think that would mean if it didn’t work?

Jason: That I’d just have to deal with it again, and I’d still need the IgG, but we’re running out of places to put the needles in.

Barb: What do you think about the time away from home and school and friends?

Jason: I was concerned about school since if I do bad it’ll take a while to catch up.

Barb: What grade are you in?

Jason: 7^th grade

Barb: Do your friends know you’re going to be gone?

Jason: I haven’t told them. I told one though. He hasn’t responded yet. I told him in an email.

Barb: So, what do you think he will make of the fact that you have to go across the country for gene therapy?

Jason: I don’t know. He’ll probably ask, what is that?

Sy: Have you told him you have SCID or just that you’re going to be gone for something medical?

Jason: I just told him I’m going to be gone for medical.

Sy: That’s one thing that I’ve been kind of worried about as he’s gotten older because he’s asked me before, “Do I have to tell people I have SCID?” I’ve said, “That’s completely your business.” This time we’re going to be gone for about a week and a half. Then the 3^rd visit is going to be quite long. So, I’ve told him to start thinking about what to tell people. They’ll know he’s not going on vacation for that long, so those questions are going to come up. I’ve worried since he was probably nine, how is he going to want to share that? How are other kids going to take it? You know, this middle school age is tough. But it’s up to him. He’s old enough to share what he wants to share.

Barb: So, your friends don’t know anything about SCID? Do they know that you get sick easily or that you get infusions?

Jason: I haven’t told them anything.

Well, if I tell them (I have SCID), they’re probably going to say, “What’s that?”

Barb: Then would you have to explain it?

Jason: But I don’t know how to explain it.

Barb: Is there anything that you’ve learned along the way that you want other patients like you, or younger than you, to know about gene therapy?

Jason: I’d say that it’s a trial. They don’t know if it’s actually going to work. It’s new so we don’t know if it’s actually going to (be successful) 100% of the time. So, I would tell them to be confident that it’s going to work, but it’s actually very new and it’s still being tested out. It’s not proven enough so the people can trust in it fully. It’s not a 100% chance.