After the Storm

by Phakisha Peterson

After Hurricanes Katrina, Rita and Wilma ravaged the Gulf Coast in the fall of 2005, MDA reported stories on several families coping with neuromuscular disease whose lives were uprooted by the storms.

Now, about one year later, how are these individuals faring? The stories below detail a wide range of responses — from those whose lives are almost back to normal, to some whose lives are still devastated, and others for whom life has become a bold adventure.

Included are updates on:

• John Hebert, Charcot-Marie-Tooth disease (CMT), formerly of Chalmette, La.
• Damian and Fabian Walton, limb-girdle muscular dystrophy (LGMD), formerly of New Orleans
• Kathy and Cody Miller, spinal muscular atrophy (SMA), Port Neches, Texas
• Shelley Obrand, unspecified muscular dystrophy, Davie, Fla.
• The “Smith” family, CMT, Coden, Ala.
• The Kay family, LGMD, New Orleans
• Barbara Twardowski, CMT, New Orleans
• The Ferrier family, ALS, formerly of New Orleans

In addition, a new family has been added, the Strauss family, formerly of Nome, Texas. Christopher Strauss, who has Duchenne muscular dystrophy, and his family were helped following Hurricane Rita by Bo Coble of Winston-Salem, N.C., who has SMA.

Helping Hands

RICHARD, MICHELLE, KIMBERLY, CHRISTOPHER STRAUSS
Dayton, Ohio
Duchenne muscular dystrophy

KEITH “BO” COBLE
Winston-Salem, N.C.
Spinal muscular atrophy

Aug. 4, 2006

Is your hero faster than a speeding bullet? More powerful than a locomotive? Able to leap a tall building in a single bound?

Does someone have to possess paranormal powers like super-speed or super-strength to be considered a hero?

Well, not if you ask the Strauss family.

Last September Richard and Michelle Strauss and their children, Christopher and Kimberly, were among the hundreds of families displaced from their southeast Texas home by Hurricane Rita.

The family left Nome, Texas, and headed for Dayton, Ohio, to stay with family members. Ironically, they’d just moved from Dayton to Nome less than a year earlier.

The more than 1,000 miles from Texas to Ohio were unforgiving on their old adapted van, the main mode of transportation for Christopher, 18.

After arriving in Dayton, Richard knew it was time for a new van. How he was going to pay for it was another issue.

Richard created a Web site where people could learn about the Strausses’ dilemma and help them purchase a new van.

Unfortunately, the Strausses’ request for donations occurred simultaneously with countless reports of alleged emergency assistance fraud and abuse.

“There were several people who thought we were fakes or frauds,” says Richard. “We did get accused of ‘using the system’ and a few other things.”

Despite doubters, donations came from a trucking company, teachers and others who wanted to help the family. They raised a considerable amount of money, but still had a long way to go.

“This is where our hero, Bo, comes in,” says Richard.

Richard found Coble’s Web site, www.BodaciousRides.com, while searching the Internet and sent him an e-mail detailing the Strausses’ mission.

Coble was more than willing to help the family after learning about their dilemma.

“Having a form of MD myself, I know what it is like to want and need the help like the Strauss family needed,” says Coble. “Therefore, since I was able to help, I was more than happy to do so.”

Coble asked visitors to www.SuperSportsPix.com, his sports handicapping site, to donate money to the family. And they did, more than $1,000 worth.

Not to be outdone, Coble donated more than $2,000 out of his own pocket to the family.

After only a month and a half of fund-raising the family was able to purchase a new van.

“We could not get parts for our old blue van, a 1989 with a wheelchair lift,” says Richard. “We still have it, but it is in terrible shape. We keep it for a spare, just in case.”

In the days following Hurricane Rita, the family’s days were desolate, but now, says Richard, they’re doing fine.

They accomplished their goal of purchasing a new van, Christopher celebrated his 18th birthday on July 26 and Kimberly turned 15 in late August.

Now that they live in Dayton, they don’t worry about hurricanes destroying their home. But when the next storm occurs, regardless of your location, Richard Strauss has two words of advice: Leave early.

Rebuilding a Life

JOHN HEBERT
Chalmette, La.
Charcot-Marie-Tooth disease (CMT)

Aug. 4, 2006

Nearly one year after the destruction of Hurricane Katrina and the ruin of the “Big Easy,” John Hebert, 50, has returned to Chalmette, La. — but solely as a renovator.

The Louisiana native has vowed not to return to his home in the St. Bernard Parish until an efficient levee system is constructed.

Since then Hebert has been keeping dry in an apartment in Birmingham, Ala., nearly six hours away from his hurricane-ravaged hometown.

“I’m living comfortably but I don’t know anyone here, I don’t have any family here. My live-in girlfriend wants to go back but I won’t be moving back there,” says Hebert.

Rather, Hebert is rebuilding his home in Chalmette and plans to lease the finished product.

“I’m not going through another storm again, so I’m renting it out,” says Hebert. “I’m looking to move to Watson, right outside of Baton Rouge in Livingston Parish.”

The money received from his flood insurance policy is permitting Hebert to rebuild his home, but more importantly, is allowing him to purchase groceries, clothing and other items needed day to day.

“If it was not for the money I got from my flood insurance I would not be making it. I’m living off the money I got from a lump sum settlement with Allstate,” says Hebert. “You know, FEMA has not lived up to their promise. They promised 18 months of support for housing and they have not lived up to that.”

Hebert learned, much to his relief, that his son, two daughters and other family members evacuated safely.

In the event of another natural disaster, Hebert said the government should disburse financial aid more judiciously.

“The government should have made sure that the people who really needed financial support got it. There were unfair payments of money, fraud, all of that,” says Hebert.

Starting Over in the ‘City of Angels’

DAMIAN AND FABIAN WALTON
Los Angeles
Limb-girdle muscular dystrophy

Aug. 4, 2006

After surviving together one of the deadliest hurricanes in U.S. history, then grieving the loss of a grandmother and grandfather from unrelated causes, Rhonda Toy and her sons, Damian, 31, and Fabian, 28, decided to split ways.

Fabian Walton shops at a Korean market in downtown L.A.

Rhonda stayed in Houston where she enrolled in the College of Biblical Studies to pursue a bachelor’s degree in Christian ministry.

The Walton brothers left Houston for the cluttered and eclectic streets of the “City of Angels.”

“I just want a quiet, peaceful life, some peace of mind. I just want to start over new,” says Fabian. “I liked it in Houston, living with my mother and brother, but I wanted to move on.”

Damian says he and his brother have encountered some discrimination in Los Angeles, and they’ve spent over $2,500 in hotel charges while looking for affordable housing — an arduous task considering the city’s pricey real estate market.

“Some places didn’t have ramps for us to get to the office to fill out applications; others didn’t want to deal with us because our credit is bad,” says Damian. “My brother had some identity theft. We didn’t know we had bad credit.”

During the disorder following Hurricane Katrina, Fabian’s Social Security card and a credit card were stolen. A car, lights and other items were purchased without his knowledge.

“My credit is all messed up. I’m disputing the charges and waiting to hear back from my creditors,” says Fabian.

In the meantime, the brothers are trying to adjust to their new lives. They agree that their current neighborhood is safer and more inviting than their last one in Houston, and living a stone’s throw from Hollywood Boulevard and the legendary Walk of Fame is “kinda cool.”

Damian Walton in his new apartment

“I could be an extra in a commercial. I heard it’s like $150, $250 easy,” says Fabian.

Damian says their landlord has been helpful and has made some accessibility modifications to their apartment. Their father and his relatives live nearby and are willing to lend a helping hand.

Both Damian and Fabian plan to contact their local MDA office once they’ve settled in. Fabian would like to have a check-up and Damian has a variety of needs.

“My condition is worsening. I can’t bathe myself, cooking is dangerous,” says Damian. “I need a nurse’s aide, someone to cook and clean around the house, a primary care doctor or physician and I’ll be set.”

Rhonda and her sons evacuated New Orleans before Katrina hit, but lost everything they left behind. After a year long bout with FEMA, they received some money for damages and personal property.

Although their $1,725-a-month apartment is costly, the brothers share the same thought about returning to New Orleans — absolutely not.

“I wouldn’t move back to New Orleans for nothing. The people who were in nursing homes, who couldn’t help themselves were left to die, to suffer and perish,” says Damian.

“I don’t want to be in that number.”

Good Deeds Came Back to Them

KATHY AND CODY MILLER
Port Neches, Texas
Spinal muscular atrophy

Aug. 9, 2006

It’s been a “hectic” seven months since the Millers moved back into their Port Neches home after it was damaged by Hurricane Rita, which hit the Texas coast a few weeks after Katrina. They’re still doing repairs.

But thanks to a friend, the damage to their home wasn’t as extensive as it could have been.

“I have a friend who works for the fire department, he came and put fence boards against my windows to prevent rain from coming in,” says Kathy. “We would’ve had 10 times the damage if it wasn’t for those boards.”

Although insurance is covering some of the repairs to the Millers’ home, Kathy is having trouble getting help from the Small Business Administration (SBA) to re-establish her uninsured business, which also was heavily damaged.

“It’s been a challenge. SBA has not followed through, they have been absolutely zero help,” says Kathy. “My local SBA has been very kind but to no avail. We haven’t gotten any type of assistance through SBA.”

Aside from insurance woes, Kathy and her son Cody, 15, who has SMA, are “doing all right” and have run into some good fortune. It’s possible that the helping hand they extended to resettle 41 Hurricane Katrina evacuees in their town prior to Hurricane Rita is part of the reason.

“When you sow seeds you’ll be taken care of. But we didn’t do it for that reason,” says Kathy. “We were in a position to help, so we did.”

When Hurricane Rita targeted their area, the family fled to Dallas, where they stayed at a Ronald McDonald House and later with a family friend.

Over the course of five months in Dallas, the Millers were welcomed with open arms and made some “lifetime” friends. They were also selected by Southwest Airlines, along with three other families, to receive a free trip to Los Angeles to watch a Lakers basketball game — an experience Kathy regards as a blessing.

“It was like Make-A-Wish without making a wish,” says Kathy. “It was the most amazing experience we ever had. It was enlightening to Cody’s life, priceless, just an awesome experience.”

Knowing how unpredictable Mother Nature is, Kathy has taken some precautions to prepare for the next storm. She’s ordered prescriptions for medications 30 days in advance, purchased a generator, designated an escape destination so friends and family can easily locate her, and has plenty of canned foods and water on hand.

She advises others living in disaster-prone areas to do the same.

“Whatever is dealt out you deal with, trust in God, and keep the faith.”

Watching and Waiting for the Next Storm

SHELLEY OBRAND
Davie, Fla.
Non-specific MD

Aug. 9, 2006

If there is one thing Shelley Obrand, 48, has learned after last year’s hurricane season, it’s to be prepared.

Hurricane Katrina knocked out her power for more than 50 hours. With the help of local fire fighters, who provided Obrand with functional batteries, she was able to run her BiPAP machine. Two months later, Hurricane Wilma flattened the area again.

Since then she has purchased a generator to use if her power should unexpectedly go out again. But so far, the month of August — usually one of the more perilous of the hurricane season — has been quiet.

For the most part, Obrand, her mother and the town of Davie have tried to resume some normalcy. She’s still working at Nova Southeastern University in Fort Lauderdale, and she and her neighbors have “banded together” to help one another along.

“There are still trees down in certain areas, screens are ripped off and roofs are missing tiles,” she says. “You can never forget what happened when you see holes and tarps on roofs.”

She credits the lack of repairs to the homes in Davie to high, unaffordable insurance rates.

“It’s so out of proportion,” she says. “The cost of insurance and deductibles are much higher.”

Despite the visual reminders of the storm, Obrand does her best to keep moving forward.

“We try not to dwell on it because what is going to happen will happen,” she says. “We have our preserves, and we’re trying to be as well prepared as we can.”

Simply Surviving, Surrounded by Debris

*THE “SMITH” FAMILY
Coden, Ala.
Charcot-Marie-Tooth disease (CMT)
(*The family has asked that their real names not be used, for personal reasons.)

Aug. 10, 2006

The sight of Coden, Ala., a small, tranquil fishing town off the southern Alabama shore, can be summed up in one word: Ugly.

Charlotte Smith, who has CMT type 1, can’t think of any other word to describe her once-cozy town.

“There really hasn’t been any change (since Hurricane Katrina). There’s trash and piles of debris everywhere,” says Charlotte. “Sometimes a truck will come by to pick things up but it’s never consistent. The town is still basically ugly.”

The storm’s raging winds considerably damaged their home and demolished their shed, which contained tools, assistive equipment like wheelchairs and walkers, and irreplaceable family heirlooms. However, their location just above the Bayou Le Batre cove saved them from the flood waters.

If Charlotte had her way, she and her family would move away from the Alabama coastline because “it’s just not safe anymore.” But before they uproot, Charlotte is waiting for the outcome of the upcoming gubernatorial elections in November.

Tim James, son of former Alabama Gov. Forrest Hood “Fob” James Jr., made a promise to purchase the port city and give it a makeover, months before Hurricane Katrina hit the town, says Charlotte.

“Everyone is trying to figure out what’s going to happen,” she says. “The town talks about it, but some say it’s all talk and no show.”

In the meantime, Charlotte, her husband, who has CMT type 2, and three teenage children, two of whom have CMT type 1, are preparing for the worst. The Smiths have most of their belongings stored in a mini warehouse outside of the danger zone, and are living out of boxes.

The money received from homeowners’ insurance was modest, leaving the Smiths to pay for the bulk of the damages to their home and make repairs on their own. Felled trees are still on their property, especially the two suspended dangerously near power lines.

“The power companies and churches refuse to do anything about those trees near the power lines,” says Charlotte. “They’re too afraid to remove them.”

As for herself and her husband, their condition has gone from bad to worse. Charlotte says their CMT has flared up significantly, which makes her wonder if there is something beyond CMT causing her pain.

“We’ve gone to a lot of doctors to figure out what’s happening with our conditions. They’ve gotten worse, especially mine,” says Charlotte. “It’s been an ongoing thing.”

Now, they just wait.

“We’re just surviving, that’s all we can do. We can only hope and pray things will turn in this town.”

Back Home and Back to School

THE KAY FAMILY
New Orleans
LGMD

Aug. 11, 2006

When you’ve had some rough days, nothing beats getting some quality rest and relaxation, and the Kay family got plenty of it some 9,000 miles away from their New Orleans home.

The family moved back to Louisiana in January after spending time in Houston following last year’s hurricane. It took nine months for the roof of their New Orleans-area home to be completely restored, but a tattered roof was the extent of damages caused by Katrina.

“We had about $100,000 worth of damage, but we didn’t have any flooding. Our roof was torn off so a lot of the damage was from rain leaking into the house,” says Maria. “Trees were uprooted and our deck was completely demolished, but the roof was the bulk of our damage.”

After a chaotic year of being displaced, adjusting to an unfamiliar area, personal losses and the loss of friends who relocated, Maria and Dennis decided it was time for a vacation.

In early August, Maria, Dennis, and their children, Danielle, 17, Christian, 14, and Andrew, 11, traveled to Hawaii, Hong Kong, Bangkok and Chiang Mai, Thailand, for two weeks. They even trekked the mountainous terrain of Chiang Mai on elephants.

“He got on top of an elephant and was able to tolerate it, so it worked out well,” Maria says about her son Christian, who has LGMD. “The kids had a great trip.”

Now the Kays are gearing up for the start of a new school year. Christian will begin his freshman year at Benjamin Franklin High School (BFHS), which suffered severe flooding in Katrina. The interior was coated with mold, the gym floor was terribly warped, instruments worth nearly $100,000 were damaged and felled trees lay all around the campus.

BARBARA TWARDOWSKI
Mandeville, La.
Charcot-Marie-Tooth disease

Aug. 16, 2006

The lakefront town of Mandeville, just outside New Orleans, was significantly damaged by Hurricane Katrina. Since then, resident Barbara Twardowski, 47, her family and neighbors are “just trying to make do.”

The Twardowskis’ home was 40 percent destroyed by Katrina. Felled pine trees punctured the roof and broke windows, allowing rain to pour in. But it could have been worse, she says. A house at the end of her block was completely demolished.

An estimated 20,000 homes in St. Tammany Parish were damaged by Katrina’s severe winds. The phrase “I lost my home” was commonly heard after the storm, says Twardowski. Stores and fast-food restaurants now close early because there aren’t enough people available to work.

“Every store has Help Wanted signs. Burger King and Wendy’s are offering $10 an hour,” jests Barbara. “I mean, that’s just how much they need help.”

The Twardowskis – Barbara, husband Jim and son Weston, 15, -- fled to Lufkin, Texas, before Katrina hit, and returned three weeks later as advised by county officials. Unable to find a hotel in the area, they took shelter in the undamaged part of their home.

For seven months the Twardowskis lived in a room under a blue tarp roof. Dirt and debris from the exposed attic rested on the warped wood floors of the home.

“It looked like a war zone,” Twardowski says.

The Twardowskis could have gotten a FEMA trailer, but they were too small. Friends offered shelter, but their homes weren’t wheelchair accessible. Living in their damaged home was the only wheelchair-accessible accommodation available.

“For myself, it was frustrating because anyone who uses a wheelchair needs accessibility,” Twardowski says. “If I go to a party at a friend’s house whose restroom isn’t wheelchair accessible it’s like, ‘Okay, how long will my bladder last?’”

Now, repairs to the home are complete with the exception of a few broken windows and some other minor things. Everything, from the ceiling to the floor, was stripped out and the Twardowskis were able to do some remodeling.

Virtually every room in the home received new flooring and ceilings, but the kitchen underwent the most complete overhaul. The bar area was replaced with countertops, and a few cabinets replaced with drawers. They didn’t rebuild the island. All the changes made for a more ideal living space.

Twardowski now has more space to maneuver in her kitchen because the island is gone. The drawers allow easier access to items, and the new countertops allow her to see and interact with people in the adjoining breakfast room.

Barbara credits her knowledge of accessible (“universal”) design to the experience she and her husband have as freelance writers for several publications including MDA’s Quest.

“My experience in writing on universal design, having talked to experts, allowed me to tap into knowledge to rebuild our kitchen,” says Barbara. “Our contractor is wonderful, but not many people are knowledgeable about universal design.”

The Twardowskis have lived in Mandeville for 15 years and don’t plan to move away.

Rather, they’re taking precautions for the next storm.

“You have to think in terms of survival. Plan ahead,” says Barbara. “Find a comfort zone, if possible, outside of your danger area.”

THE FERRIER FAMILY
Humble, Texas
Amyotrophic lateral sclerosis

Aug. 17, 2006

When Walter and Valetter Ferrier heard the warnings of Hurricane Katrina’s potency, they evacuated to Humble, Texas, a small town just outside of Houston.

They packed light, as they weren’t planning to stay long, but when news broke that the levees near their eastern New Orleans home had breached, they knew their house was inundated. The Ferriers and extended family members rented apartments in the same complex in Humble.

Nearly a year later, Humble has become home.

“I haven’t gone back and I don’t want to go back,” says Valetter. “I’ve seen pictures, that’s enough.”

New Orleans residents are reluctant to do any rebuilding or renovations because of the unstable levee system in the area, she says.

“What’s the reason in refurbishing your house if the government hasn’t taken care of the levee situation?” she asks.

Their New Orleans home, in walking distance of the levees, was gutted following Katrina. They were able to salvage some furniture but irreplaceable items like a wedding album and “precious” photographs were lost.

The Ferrier family has undergone a solemn change in the months following Katrina. In May, Walter, 57, who was battling ALS, died.

Despite their loss, Valetter, her sons, Walter III and Shannon, family members and friends press on.

Shannon and his wife, Corina, just purchased a home for themselves and their two children. Valetter Ferrier has settled into her apartment, although she finds it less sociable than her old community in New Orleans.

“You tend to keep to yourself,” she says.

However, she appreciates being in close proximity to relatives and friends, and Houston’s M.D. Anderson Cancer Center, where she undergoes chemotherapy for breast cancer that has metastasized into bone cancer.

“Everything is going well,” says Ferrier, her voice alive with optimism and fortitude.

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