Rett Syndrome. Dreaming of a cure! Will there be a cure?

[00:00:02]So, my name's Nancy. I'm a mom to six kids.

[00:00:06]Three of those kids have Rett syndrome.

[00:00:09]Or should I say one had Rett syndrome and two have Rett syndrome.

[00:00:16]My oldest daughter, who was 31 at the time, she died from Rett syndrome and seizures.

[00:00:27]Could not get the seizures under control.

[00:00:29]And they just they took her.

[00:00:32]Um then we adopted two little girls and they've grown up. One is now 18 and one is 23.

[00:00:39]And I will show you a picture of them shortly.

[00:00:44]Um So, knowing what Rett syndrome does and knowing how it affects a child and now an adult, um it brings a lot of uh or should I say it can bring a lot of anxiety.

[00:01:02]Um knowing how seizures just kept coming and coming and coming and my oldest daughter was on so many seizure medicines that um in the end, there just was nothing left.

[00:01:15]There's no there was just nothing left.

[00:01:19]She um she just had too many.

[00:01:26]So, um I did and what they called an interview today talking with someone uh researching and I feel like there's something behind the research. I'm not quite sure what it is, but I will let you know what it was, but I did agree to it because I like talking about my girls. I like talking about um their life and and all the things surrounding it.

[00:01:56]So, a lot of the discussions that we talked about was how do I make medical decisions? How do I make the decisions concerning their um well-being. And what does it take for me to make certain decisions? And we just went round and round for uh it was an hour and about 20 minutes.

[00:02:21]So, the interview went well.

[00:02:24]Of course, in the end um I did cry.

[00:02:28]You you may have seen me cry before, I don't know, but you know, sometimes I just get to the point where it I just break.

[00:02:36]But, um you know, they did this thing where um look at all these pictures and tell me the first picture that you look at, how do you identify that or compare that with the thought of putting your child on a medication that may cure them or make their symptoms better.

[00:03:01]Of course, one of the first picture I saw, there was I don't probably 18.

[00:03:07]The first picture I saw, it was a person cuz I only saw the hands with the and it looked like it was throwing a a bird up in the air. And a dove or whatever.

[00:03:20]Um and I said, well, that one caught my eye pretty quickly.

[00:03:26]And the reason why it caught you know, and me explaining it was it looks like me you know, throwing something in the air and saying be free.

[00:03:43]Just be free.

[00:03:45]And one thing that I would I would love is for my girls to be free of Rett syndrome here on this earth. Now, I know that when they go to heaven, they will not take Rett syndrome with them. I know that my oldest daughter did not take Rett syndrome with her. She's free of it. She's she's fine. Um but I I want my girls to be fine here. And so I I said, you know, that's kind of symbolic as yes, I'm I want to try this medication that could make Rett syndrome better or even cure it. Yes, of course. And so and then you know, and then this the the questions got even deeper.

[00:04:30]With saying all that, um I guess to what extent would we try a a medication that carries risk?

[00:04:44]How how big is the risk?

[00:04:47]And so we talked about that a lot. It it brings up so much inside of me because there there is a medication that Laney is on that is for to treat Rett syndrome.

[00:05:03]And she's on a low dose. She is not on the top dose. She is on a very low dose for her because we have just been adding a little bit at a time and increasing it until, you know, we reach where where our goal would be.

[00:05:21]Does it come with risk? Yes, it comes with risk. It comes with, you know, um risk for um GI issues and that sort of thing. That's why we're going slow because the first time she tried it we had major GI issues.

[00:05:37]Britt, on the other hand, she tried it.

[00:05:39]We we had her on it and the doctors pulled her off of it because they felt like she had GI issues because of it.

[00:05:45]Well, come to find out that's not her problem and so now I've got to work. We're going to work with another doctor and get her back on it, you know, pretty soon.

[00:05:57]So, when you have a child with a syndrome and in with in that syndrome there are many um studies and the scientists are working hard like millions and millions and millions of dollars have been put into finding a cure and finding treatment for Rett syndrome.

[00:06:20]And we are we are very proud of how far they've come um to the they for instance, the mice in the labs, they cured the mice of Rett syndrome.

[00:06:41]Cured it.

[00:06:42]The mice did the same thing. If you've ever watched any of my videos, you'll watch the girls they may put their hand in their mouth, they wring their hands, um they tap their hands, they do breath holding, hyperventilate, all these things girls can't walk.

[00:07:01]The mice had all these issues and they injected whatever they injected into these mice and they were cured.

[00:07:12]Now, from my understanding, they cannot inject that stuff into into human beings, but they but they have an answer and I'm not scientific. Science was never my thing. I like math, but I never liked science.

[00:07:29]And so I can't like I can't explain everything to you. I just know the gist of things.

[00:07:36]So, um so the question is, if you've got a child that has all these symptoms and seizures, they can't eat by mouth, they can't walk, they can't use their hands, but the scientists are working on, you know, things that's going to help them and you know, and this one drug was approved and I'm I know there's another one coming right behind of it and so what if it comes with risk?

[00:08:13]So you do this balancing thing.

[00:08:15]Like benefits, risk, doing How can we minimalize the risk?

[00:08:22]And that's what's playing in my mind right now is um if if the choice came and it was offered to us, what would we do?

[00:08:39]I mean, you tell me what you would do if you're in my shoes.

[00:08:44]Now, if you're not in my shoes and you don't have a child with a syndrome uh or you know, with a terrible disease, it's really hard to, you know, make it make a good guess.

[00:09:00]I mean, you I guess you can.

[00:09:03]Let's say you can. Just make a good guess of what you would do.

[00:09:07]Some people would say, I would never let my child be the guinea pig. I get that.

[00:09:11]I have said that before.

[00:09:15]But they never release a drug unless it's had study after study after study after study. And then they make the study public so that you know, this is what you're getting into.

[00:09:27]This is the risk that you're taking.

[00:09:29]This is the percentage rate of, you know, success or the percentage rate of this side effect.

[00:09:37]So that's what That's what I'm thinking about.

[00:09:41]Cuz I can't stop thinking about it since we got off the phone.

[00:09:43]And we've been off the phone a couple hours, but um I I really would love for my girls to be able to talk to me.

[00:09:55]Even if they got things to say that um you know, "Why in the world did you do this? And why in the world did you make you do this?" And I'll I'll be like, "I apologize. Keep talking to me."

[00:10:10]Like, I'm not I would I would just will love it. I would love hearing their voice. Um So, anyways, the girls are currently um watching their movie and I am about to go and sit down and just kind of rest my head and mind for a little bit. It's been a long Monday.

[00:10:32]And uh I'd love to hear from you. Give me your opinions.

[00:10:36]Whatever you think.

[00:10:40]Cuz I am all over the board of what I think right now. And um Thank you for watching. I appreciate you being here. I appreciate you caring about our family.

[00:10:51]And those that have continuously check in and watch our videos, thank you so much. Listen, if you like this video, if you hit the like button.

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[00:11:04]It would mean a lot. Um I'm building a a community.

[00:11:08]I can't tell you how many people I've talked to um just over the last 5 months of doing these videos.

[00:11:18]And I am so appreciative of the wisdom that comes across in the comments and uh the kindness and the love.

[00:11:28]It It It just means so much.

[00:11:30]All right, the wind is picking up.

[00:11:33]And so uh things are about to get ugly.

[00:11:35]So thank you for watching and I'll see you again soon.