I remember her eyeliner. I had been thirteen and she or he was a friend of my mom's, picking me up on a summery afternoon so I could babysit her two young children. It was the last time i was ever in a car together.

\”Do you want music?\” she asked. U2 played faintly within the sound of the road and I agreed, I did like music. She was an erratic driver but she am friendly I didn't mind. Beverly Sliepka-Bev-had long blond hair and a huge, room-lighting smile, but my gaze kept straying back to her wobbly, uneven eyeliner. It looked like it'd taken several tries but still wasn't quite right. I wondered if she was aware of it.

\”She always struck me as so youthful,\” certainly one of her longtime friends, Sharon, said to me recently. She has trouble talking about Bev for long without tearing up. \”A cheerleader type, active. I always thought she had a charmed life. Looking at her wedding photos-beautiful bride, handsome groom, their nice house, two kids –

\”I remember a weight road trip together with her towards the Hill Country. We stayed together with her mom who had been this quintessential Southern lady. She'd doilies on all her tables. She and Bev were both so nice and so capable. I didn't have to worry about anything,\” Sharon said and paused. \”Things couldn't have changed more.\”

\”One time a group of us were taking a walk,\” another friend, Helene, said. \”I started to notice that when you were walking next to Bev, she'd gradually encounter you; she'd a sideways step. Her balance was off. All of us think it is odd but didn't be worried about it an excessive amount of.\”

The first person to suggest that something was wrong was a cousin-a nurse-in town for a visit. He pointed out that when Bev walked, her feet turned oddly, one to along side it.

\”I do not know what it really might be,\” he admitted. \”But I believe you need to see someone about it.\”

Bev and Dave were built with a young baby, Payton, and were too preoccupied to dwell on what their cousin said. It was only later that they started to see the signs themselves.

After the birth of the second child, Bev's natural clumsiness went from harmless to pronounced. There was no question that something was wrong. In 2002, they visited see a neurologist. Bev had been adopted like a baby and never looked for her biological parents, so she'd no genetic history. The neurologist had no logical starting point, so he started testing for just one possibility at any given time.

At first, he suspected MS. It was the first of the items would be many tests for Bev. Tearfully, she and her husband prayed the test will come back negative, and it did. Next they checked for Parkinson's. Then brain cancer. Blood tests turned to CTs, MRIs and spinal taps.

\”I can't anymore, I quit,\” Bev said several times. \”I can't do more tests.\” However the breaks from testing were never long. There is always a reason to go back.

\”What are you looking for?\” she'd ask the neurologist desperately.

He was very patient as well as in hindsight, wise. \”I could let you know 20 things that it may be and you'd worry about 20 things,\” he said. \”If I tell you I'm testing for MS, you'll be worried about MS until we obtain the end result. Then, if I let you know we're testing for brain cancer, you'll be worried about that. I'd rather find out what it is and tell you when we discover.\”

After four years of testing, Bev and Dave had a long list of that which was not wrong. As symptoms worsened, they believed no closer to an explanation. She started experiencing sudden unexplainable bouts of irritability, her thoughts grew more scattered, and her legs began to spasm. Her neurologist gently suggested she stop driving. Bev abhorred the thought of being homebound, of losing her freedom, but after two minor car accidents-one with her little boys in the backseat-she gave up her keys.

In 2007, they finally got an answer. Their neurologist sat them down in the office and asked if they'd ever heard of Huntington's Disease.

\”No,\” Dave replied, bewildered.

There would be a brief pause. \”We're concerned that it's Huntington's,\” the doctor said. Choosing his words cautiously, he was quoted saying it's an inherited disorder and that they will have to test for that gene.

After Bev's blood was taken for testing, Dave dropped her aware of a kiss and returned to the office. However, he couldn't concentrate on sales. Instead, he typed \”Huntington's\” into Google. The very first result was a video of someone sitting in a wheelchair, unnaturally thin with jerky movements and slurred speech. Dave was chilled to the bone.

Later, the neurologist confirmed his suspicion. Bev had Huntington's. Dave called his mother-in-law to inform her the news. He swears he'll never forget the way she screamed in to the phone. He realized then that Huntington's wasn't an analysis but a death sentence.

Huntington's Disease causes the progressive breakdown of nerve cells in the brain. It's like getting ALS, Parkinson's and Alzheimer's simultaneously. It's name is a family disease because every child of the parent with Huntington's Disease includes a 50 % chance of carrying the faulty gene. Everyone who inherits the Huntington's Disease gene will ultimately develop the disease.

Today, roughly 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. Following the start of symptoms-typically in their 40s-individuals with Huntington's Disease face an average life span of 20 years. Usually they die not from Huntington's Disease itself, but from complications such as choking or infection.

For Bev, the primary horror wasn't what lay available for her however for her young kids. Genetic testing for children of oldsters with Huntington's Disease is usually prohibited until they are 18, unless they display symptoms of early onset. Her boys are generally at risk.

Bev and Dave began learning everything they could about Huntington's Disease, which is rare and notoriously difficult to diagnose. Doctors need to specifically test for this. It's not the sort of disease a doctor would stumble upon unless they likely to think it is. It's misdiagnosed as lupus.

Bev and Dave also searched for her biological parents. While they never tracked down her birth father, they found information on her birth mother. She had died two years previously in a fairly early age. The reason for death was listed as lupus.

Ten years later

The Sliepka family resides inside a two-story house inside a quiet Plano neighborhood. Halloween is heavy in mid-air. Plastic pumpkins sit by the door along with a gauzy ghost floats through the walkway. It's one of the first chilly times of the entire year.

\”Bev always loves decorating. She has stuff for every holiday,\” Dave admits. \”I hate decorating. I don't mind once it's up, but I hate doing the work. But she's sad when we don't, so -\” He waves at a cartoon witch dangling in the window and rushes back to the table; he's in the center of giving his wife of 21 years lunch.

A Dachshund mix vaults onto the high back from the couch and perches there like a squirrel, wagging his tail.

\”That's Cody. We've had him for three years,\” Dave says, feeding Bev a bite of chicken and rice. \”Bev, chew. We worried the dog would get under her feet and she'd fall, but that hasn't happened once. She calls him 'her puppy.' Bev, chew.\” Dave helps her using the water glass she's grasping for. \”So, how did we meet, Bev?\”

\”Skiing,\” Bev replies. \”Colorado.\” Bev's blond hair is short along with a little lighter now of computer was once. She's looking forward to getting platinum highlights. Her movements are jerky and, these days, she's confined to a wheelchair, but she's thrilled to have a visitor. While it's admittedly hard for me to know her slurred speech, Dave catches every word.

\”We met in Steamboat Springs on the singles' ski trip,\” he adds. \”We actually didn't meet before the last night from the trip. I am not saying it had been love initially sight, however i knew immediately there is something between us,\” he says, feeding her another spoonful. \”We got engaged a year towards the day we met.\”

A lot has changed since Bev's diagnosis. Her two little boys are not-so-little; Payton is 17, and Zach is 13 and also over 6-feet tall. After Huntington's started to take hold, Bev's mother moved in to the house nearby. She took care of Bev day in and day trip while Dave worked. Earlier this year, however, she developed Parkinson's and dementia, and now both she and Bev have caretakers. Still, whenever she comes over, she walks around primping the home and reminding the caretaker to ensure Bev has enough water.

\”In Huntington's Disease support group, we love to to say 'adjusting to the new normal,'\” Dave says. \”You undergo stages of loss. I can not tell you how often we've said, 'That's the final time we will the films, or even the last time we will a Mavs' game.' Now a wheelchair is the new normal. So is having a paid caretaker.\”

Bev and Dave are members of a small local community of people who have Huntington's Disease, are in chance of having it, or know someone who has it. They participate in the annual Huntington's Disease Walk and often go to the monthly support conferences, though Dave admits that's hard.

\”Most of those are like me, caregivers. Some members have died. There's one mother whose son died four years ago. After i went and asked a woman where her husband was. They'd gotten the divorce. He couldn't handle her diagnosis.\”

For Dave, leaving Bev has not been an option. He states he's never trained with a thought. \”I mean, what would I actually do, go try to live a better life? I'd just worry about her and also the boys. That isn't better. I've seen it happen, but to me, it's just no option.\”

As the disease got its toll, their dynamic has shifted. These days, Dave and Bev more closely resemble a caregiver and a patient than the usual couple. At a certain point, Dave recalls she stopped asking about him, about work, about how he felt.

In his efforts to keep his wife from a facility-a future that grows closer every day-he has provided up privacy, ease and income. When their paid caregivers clock out during the day, he's afraid to leave Bev alone long enough to go to the restroom. He works from home like a sports collectibles consultant.

Money is tight. Because Bev was diagnosed in her own 40s, years before many people even consider taking out long-term disability insurance, they do not obtain that crucial coverage for Bev's care.

Though it is going against his nature to inquire about help, last year Dave reluctantly set up a GoFundMe page having a $50,000 goal-gofundme.com/BevsCare. Donations have trickled in and, while they're nowhere near their goal, every penny has helped.

It's been a ten-year-long, slow grieving process with simply one outcome. \”But you never really know [about life],\” Dave says. \”After we found out Bev's diagnosis, I told my friend, Brad. He and the wife would stop by to aid us and produce us a meal. The next Friday, he calls me. His wife passed away of a brain hemorrhage from nowhere. Instantly it went from him helping me to me helping him.\”

That friend recently remarried. He and Dave talk sometimes about who been with them worse. While Brad didn't have warning or opportunity to say goodbye, Dave has felt himself losing Bev for any decade.

\”It accustomed to cause me to feel angry thinking about retirement, travel, grandkids, all this items that we wouldn't have-but she's still here. Not every one of her, but parts of her,\” he says. He hasn't ever been able to choose which situation is much better.