Narrator:
Victoria Jackson has everything most of us only fantasize about, a hugely successful business as a makeup maven, several homes including a sprawling ranch on a hilltop near Santa Barbara, and a wonderful family. Her husband, Bill Guthy, half of Guthy-Renker, built an infomercial empire. Together, they were an unstoppable power couple, but none of it mattered.
Narrator:
In 2008, Victoria’s life came to a screeching halt when their daughter, Ali, said she was having trouble seeing.
Victoria Jackson:
We had just come back from a family trip and she was starting to lose her vision. I thought, “Well, maybe she’s got an eye infection,” something. “We’ll put drops in your eyes and you’ll be fine,” but it was getting worse and worse.
Narrator:
Ali was diagnosed with NMO, Neuromyelitis optica, a very rare and often misdiagnosed disease that usually affects the optic nerves and spinal cord, which can lead to blindness, paralysis, even death. There is no cure.
Victoria Jackson:
I spoke to the first doctor who diagnosed Ali at the Mayo Clinic and I said, “You don’t know who I am. You know my daughter has this. Are you doing any research?” He said, “Well, actually I am doing a small amount of research.” I go, “Well, that small amount of research is going to become a very big amount of research because I’m a mom on a mission and a woman with a checkbook. So now we’ve met. So now we start.”
Interviewer:
Here we go. Buckle up baby.
Victoria Jackson:
Yeah, exactly, buckle up.
Narrator:
With NMO, looks can be deceiving. Ali may seem like an active healthy teen, but over the past few years, she has struggled through the pain and anguish of coping with this rare disease.
Interviewer:
What happens during an attack?
Ali:
Well, it varies for different patients. For me, the primary source of my symptoms is in my spinal cord. It feels kind of like somebody is stabbing you with a knife in the back.
Interviewer:
So it’s painful?
Ali:
It’s very painful. For me, it’s kind of progressive. I may not look like I’m affected by it, but trust me, I am. On every level, I am affected by this disease.
Narrator:
The doctors gave Ali about four years to live. That was three years ago.
Interviewer:
Knowing that you can create your own reality, which you’ve done, is that what makes you very sure that you can find a cure for your daughter’s disease?
Victoria Jackson:
I think the fact is that, I know that there’s nothing that you can’t do if you put your mind to it. I’m not a scientist. I’ve had to learn extraordinary amounts of very dense science to stay in the game and be in the room with the scientists and the researchers that I have now amassed and put together in my foundation. I know that, especially when your child’s life is on the line and so many other people counting on you, there’s nothing that you can’t do. If I’m going to become a scientist, or I’m going to become a researcher, or I’m going to learn everything there is to know about this condition, then I’m going to do it.
Victoria Jackson:
It’s really nice that all of you are here. I look very much forward to the next couple of days of science.
Doctor:
They’re made, they’re common downstream effectors.
Interviewer:
Victoria has transformed herself from mascara to medicine, and is unwavering in her commitment to find a cure for her daughter and to help all those afflicted with NMO.
Victoria Jackson:
I’ve basically created something where there was absolutely nothing, and being the only foundation worldwide for this condition.
Interviewer:
There’s nothing else?
Victoria Jackson:
There is nothing else.
Interviewer:
You are the only game in town?
Victoria Jackson:
We’re it. Every dollar, everything. Right now, people, they’ll send in some money here and there, but we’re it.
Victoria Jackson:
You might actually really start coming up with some pretty extraordinary thing.
Narrator:
Victoria will tell you she never finished high school and she doesn’t have a background in science or medicine, but this mom on a mission commands a room full of science superstars.
Interviewer:
You said she’s a warrior?
Ali:
Yeah, she is.
Interviewer:
Tell me what that means.
Ali:
Well, that means that she never quits no matter what it is. She never quits. When she has her mind on something, she goes after it and she doesn’t take no for an answer.
Narrator:
Ali and Victoria are twin souls with the same spirit, bonded beyond mother-daughter closeness.
Victoria Jackson:
So how’s school?
Ali:
Yeah, school is great [inaudible 00:04:33].
Narrator:
But just underneath the surface, is the unspoken reality that at any given moment Ali’s disease can throw her into a seizure and take her life.
Interviewer:
What’s kept you from ever saying, or have you ever said, “Why me?”
Ali:
No. I’ve never really asked that question because I don’t know if there is a reason. You could think maybe it was my destiny to be chosen for this because now we can do something about that. My parents, fortunately, have been able to create this network, this amazing network of doctors, and patients, and researchers to really evolve and kind of discover the secrets behind this disease and how it can be cured.
Victoria Jackson:
Is this the radio show where you had to go after the meeting?
Narrator:
How far would a mother go to save her child? Any mom would answer, “To the ends of the earth.” For Victoria, no stone is left unturned.
Team Member:
Educate and be educated by the industries who have these drugs as proprietors.
Narrator:
The promise of a cure always comes back to the team Victoria has assembled, the approach she is pioneering, and the innovation that comes as a result of one woman’s love for her child.
Team Member:
Because that’s the way we would progress.
Victoria Jackson:
I’m doing this from my heart for Ali. Cosmetics, I’ve accomplished everything I’d hoped to. My resume has everything written on it that I want except finding a cure for NMO. If I can put that as the last line on my resume, I’ve done everything. I don’t need any other diplomas on the wall. I don’t need any other acknowledgements, accolades, or awards. I just want this cure. That’s all that matters.
