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Ali’s Story with Kathy Najimy Part 1

Kathy Najimy:

Hi, I’m Katie Couric. That’s a lie. I’m lying. I am Diane Sawyer. What? No, I’m lying again. I am Kathy Najimy, and I am here today because last year I met a woman, a mom, who actually changed my life. Actually, not true again, lying again. The very first time that I saw her was on one of the very first makeup infomercials ever. I was transfixed. She was funny, she was glamorous, she was well-spoken and thoughtful, and she was eyelined to the T, beautiful, and her name is Victoria Jackson. Hi, Victoria.

Victoria Jackson:

Hi, Kathy.

Kathy Najimy:

Now I know you as a great friend to me and our sister circle of women that you brought together, but most remarkably, as one of the most inspiring, miraculous, dedicated moms that I have ever met. You have a daughter. She’s 17 now, Ali.

Victoria Jackson:

Yes.

Kathy Najimy:

I have met her. She’s gorgeous, and she kicks ass at Boggle. And what happened when she was 14, 15 years old?

Victoria Jackson:

All of a sudden, literally we were on a family vacation, she’s about 14 and a half, and we come back, we’re in the car, and we’re sitting there and she says, “You know, mom, I kind of have this eyeball headache, and I feel like I have a headache but it feels different. There’s something wrong and actually things are starting to get blurry.” So I go to the doctor. He basically examined my daughter, who now her vision is getting worse and worse.

Kathy Najimy:

You’re probably freaking out.

Victoria Jackson:

And I’m freaking out. Now she’s still having the eye pain hurting. She’s literally almost becoming now blind in the one eye, and we get the results back from the blood tests and it says positive for NMO. And all I hear next is the doctor who originally sent me to the neurologist says, “You know what? Your daughter has NMO, which is neuromyelitis optica. She’s probably going to be potentially gone in the next four years. She’s going to be quadriplegic, blind, paralyzed, because NMO, neuromyelitis optica attacks the optic nerve, which results in blindness and the spinal cord, which results in paralysis. And it’s sort of like your body is attacking itself and eating away at the myelin sheath, which protects all the nerves. And it was just, that was the game changer right there. That was when it all just changed forever.

Kathy Najimy:

What is the progress? You talked about how when she was 14, she didn’t really know about it, and then later on when you started getting your foundation together and meeting with the doctors and getting a few answers, and piecing together a puzzle that was giving you some awareness of what was happening, what’s the change like? Is she now more into it? Does she want to know? What’s her reaction to it? Tell me about what a day is like for her.

Victoria Jackson:

There’s been this extraordinary metamorphosis of Ali, where we started with, when she wasn’t sure what was going on and she’d be watching Mystery Diagnosis on TV, going, “I think I have Reiter’s syndrome to not wanting to know to now not wanting to still be the poster child of NMO. She doesn’t want sympathy. She wants to be the girl who’s going now through her last year of school, who wants to be the captain of the tennis team, the editor in chief, who has gotten the straight A’s in school. but she looks at it like, “You know what? NMO isn’t going to define me. It’s a lifestyle, mom. It’s like a condition, a thing I have, but I’m still going to live my life.”

Victoria Jackson:

And I know it’s hard on her. You can’t still not wonder. As she said when she first found out when she saw some papers, she saw some papers on my desk that said NMO, and she said, “Is that what I have? What’s NMO?” And then we sat down and started to talk about it, and she went to her doctors and said, “I want to know how long do I have? How long do I have before I’m going to be blind and paralyzed? I need to know.” And the doctor said, “You know, Ali, hopefully that’s not going to happen, but the answer is we don’t know.” And I can see still now in Ali the girl who’s going to do it all. She’s cramming it all in. She wants to do whatever it is she’s going to do. She’s just full-on doing it, because I know there has to be that part of her that, “Well, what if I won’t be able to ever play tennis again? What if I won’t be able to do that?”

Kathy Najimy:

It’s so hard to be a teenage girl, just to be.

Victoria Jackson:

Yeah.

Kathy Najimy:

She’s carrying on with her life, because I have met her and she’s fantastic and funny and great. And I see her carrying on with her life, and knowing that there’s this thing looming, but it hasn’t seemed like it has stopped her. It doesn’t seem like someone who’s given up. So she has your strength. Whatever perseverance that you have, that crazy, miraculous thing, it seems like she has it too, because now she’s even speaking out about it, right?

Victoria Jackson:

She’s speaking out about it. We’re being honored, and she’s like, “Why are they honoring me?” And I said, “Ali, because for a lot of people, you’re an inspiration that you are dealing with what you’re dealing with, and you’re doing your thing and you’re living your life.” And it’s really bonded the two of us together, where normally at this age, mother-daughter going through their teen angst and everything else. We’re sort of joined at the hip on this. And as she turned to me and said, “You know what, mom? This isn’t just about you and I anymore. This is about something much bigger, isn’t it?” And I said, “Yeah, Ali, I guess it is. Neither one of us signed up for it. We didn’t want it. But yeah, it’s probably not just about just you and I anymore.”

 

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