This is not Beauty. But it could be. Maybe it is.

She is exquisite. A face you see in glossy magazines and think, no one really looks like that. But she does. I stare at the long, lean legs extending far below the black smock, making it seem ridiculously tiny, and wonder who is she, what is she doing in Michelle's chair?

She's doing what most women do in a beauty salon, she's having her hair done. Highlighted, cut, styled.

She is also dying.

She's 23. She will not see 24. Not without a miracle. Which doesn't yet exist.

I don't know that as I kiss Michelle hello, steal her attention for a minute to discuss what we'll do to my hair when it's my turn, I'm next. The young woman interrupts as if she is a child.

Her speech is odd. Her affect off. Her feet move restlessly, trying to find the chair's rungs, legs crossing and uncrossing.

Oh no, I think, she's mentally challenged. I must tread carefully. I smile at her and too carefully, I'm ashamed to admit, I say Hi, my name is Sally, what's your name? She tells me. But she doesn't smile. Or make eye contact.

How sad, I think. Challenged. What a shame. Such rare beauty trapped forever within a childish mind.

If only.

They bring me a smock, it touches my knees. Ha ... and I thought my legs were long. On goes the creamy color. I'm led to another chair to wait.

A woman is sitting in the chair next to me, she looks exhausted, deep in thought. By nature I'm outgoing, gregarious, normally I'd strike up a conversation. Not only to pass the time. I'm interested in people.

But something tells me, don't talk. Leave her alone.

Suddenly she leaps to her feet, attentive, ready. For what? Michelle has brought Beauty over -- my god, she must be six feet tall! Michelle asks the women, Can she go upstairs to the heat lamps? Ah, this is the girl's mother.

Yes, the mother says. But she'll have trouble coming down. That's hard for her. Michelle promises to help, so does another stylist. They touch Beauty gently, her arms, her back, as they guide her up the steps.

The mother follows. She dare not leave Beauty alone.

Two minutes later Michelle, herself a knockout, all of 29, a mother too, comes bounding down the steps and collapses into the chair vacated by Beauty's mother.

She takes a shaky breath. Oh, I can't stand it, she says. That poor girl is so sick. She's already had three strokes. The next one, they don't know when, but soon, will kill her.   

My heart freezes. Every mother's worst nightmare is sitting upstairs in my beauty salon. With her own terrified mother. Whose nightmare is real.

It's an extremely rare disease. A genetic defect. It causes stroke after stroke, destroying the brain, the organs. There's precious little treatment. Blood thinners, anti-seizure meds, dialysis. No surgery. Of course there's no cure.

It killed Beauty's father when he was 32. It will kill her too. Even younger.

They're from New York. Beauty was in fact a model, a budding actress and singer. Has a boyfriend. Remarkably, he's still in her life. Trying to be, anyway. Calls while Michelle's cutting her hair. She's playful on the phone. A normal 23-year-old having a teasing, romantic conversation.

Five minutes later, she doesn't remember he called.

Michelle tells me sometimes she'll call him 50 times a day. She doesn't remember. There's more. She hates her medications. Once, she called 911 to say her mother was forcing her to take drugs. Now the mother worries next time they'll believe it, will take her daughter from her.

Incredibly, there's an added dimension. The mother was in a car accident five years ago, she too has brain damage. Occasional seizures. Hides her own medications so Beauty won't take them by accident. And so she won't give them to Beauty by accident.

Desperate, they've come to Philadelphia to one of the few teams in the country doing targeted genetic research and clinical trials on Beauty's disease. Maybe they can buy her some time. Months. A year. 

Impossible to hope for more. Hope is too painful. Life is too painful.

They have no one here to help. No  friends, no support, nothing. No family at all, anywhere. Once a month, Michelle. Otherwise, only hospitals and doctors. Who treat Beauty like a science experiment. Those are the words the mother uses when we talk after they've come downstairs.  

They treat her like a science experiment.

She has seen me talking to her daughter as Michelle cuts her newly highlighted hair. Heard me praise her for regaining her speech so quickly. Tell her, truthfully, it's hard work, the result of her professional training. Say the words she loves to hear, how pretty she is, how special. 

Beauty responds to me. Becomes animated. Those impossibly blue eyes flash as she tells me about her modeling career, her singing, her boyfriend. Her father's death. Her disease, her three strokes.

Suddenly serious, out of context she declares, A real singing voice can't be taught, it's there or it's not. Yes, I say, it's a true gift. She lights up. Sits up straighter. Yes, she repeats, eyes shining, I have a true gift.

My eyes sting with tears. Michelle and I can't look at each other.

Her speech is clearer. Or maybe I'm used to it. No, it is clearer, she's making eye contact, she's connecting. Somehow I've reached her. And her mother smiles, years falling away, her own beauty revealed for a brief instant. She squeezes my hand, whispers Thank You.

I am inordinately proud.

About that pride? It covers my fear. My horror. My desire to wrap these poor doomed women in my arms and make it all better. 

Mother and daughter, joined in separate and collective battles for survival, are never apart. Together every waking moment. They sleep in the same bed. If you're a mother, a parent, you know this ... the mother wakes every few minutes throughout the night to see if her child is still alive.

It is monstrous. And monstrously unfair.

While Michelle dries Beauty's hair, the mother tells me they hate the doctors, who are so cold. I say you want them cold, you want them focused on the cure, not the patient. You need a different specialist, a neuropsychiatrist for both of you. A doctor to help you cope.

I give her a name. She recognizes it, she's heard it before, had forgotten. I assure her he is brilliant, a legend, yet so kind, his office warm and welcoming. She writes down his name, again, because she forgets things too.

I tell her about my nephew Alex and his battle with a rare cancer called VHL. I tell her about Alex's mother, my niece Karen, and her battle with melanoma. Not to trump her own fear and pain, god no, but to show her I understand. The process. The procedures. The fear. 

I urge her to find support groups as our family has ... there are none for Beauty's disease. But there are stroke victim support groups, I say, you need contact with others who share the same symptoms, similar daily challenges.

Maybe they'll have some strategies to help. Maybe even people to help. She hasn't thought of that. She writes it down. Because she forgets things too.

Beauty comes to us, hair a golden cloud floating around her shoulders. The smock removed, her lithe, lovely figure revealed in a form fitting white sweater over a yellow tee, low slung jeans.

Such irony. A strong young body betrayed by a deadly diseased brain.

Impossibly gorgeous, she towers over everyone, this unique girl. This glorious young woman, living on borrowed time.

Breathtaking. Heartbreaking.

Her courage towers over everyone too. As does her mother's. They each hug me as they leave. Thank me profusely, sincerely. 

In a few minutes both will have forgotten me.

I will never forget them. Never.

National Institute of Neurological Disorders and Stroke (NINDS)