Become a digitalPLUS subscriber. 99¢ for 4 weeks.
NewsMarylandBaltimore CountyTowson

MLD affects Towson woman's body, but not her spirit

People (magazine)Jim KellyBuffalo BillsTargetMultiple SclerosisKennedy Krieger Institute

There's a new normal in an old, colorful house off Regester Avenue in Anneslie.

It's one that requires a constant flow of caregivers to provide daily assistance for one of its residents, Laura Glaudemans.

Once a week, Laura, 23, visits the sixth floor of the Kennedy Krieger Institute, where she has treatments in a warm-water therapeutic pool that, above all else, take her out of her wheelchair and place her back on her feet.

For an hour every Tuesday afternoon, she and a therapist stand face-to-face, lock arms and walk slowly in step around the small pool. It's a small bit of exercise, though nothing like when Laura swam freestyle on the swim team at the Stoneleigh pool.

It's also the highlight of her week, a chance for Laura's life to, however remotely, resemble what it did when she was a child and metachromatic leukodystrophy was nothing more than a pair of words that would knock you out of a spelling bee.

Her parents, Paul and Darlene Glaudemans, say Laura was also a water ballerina at the pool, though Laura says she doesn't remember that. Her father assured that somewhere in the recesses of Laura's mind might be tucked a memory or two of twirling around in the community pool with her younger sister, Emily, now 21, or her childhood friends.

But like so many of the typically routine transmissions between the brain and the rest of her body, the message may have been lost.

"I think you did, sweetie," he told her.

She replied: "I don't know."

***

At a stage when Paul and Darlene Glaudemans should have been enjoying an empty nest in 2008, their middle daughter, Laura, moved back home after just one week at James Madison University and began taking classes locally.

Their youngest, Emily, was working at Razorbacks in Towson and taking classes at CCBC Essex, and their oldest, Tim, now 26, was also out on his own — although both lived just around the corner from the family's Anneslie home.

As far back as six years ago, the parents had noticed slight changes in Laura. With her back under their roof, the changes became more noticeable.

An avid reader who loves Nicholas Sparks books and People magazine, Laura sometimes needed her parents to read to her. A strong student in high school, she began to struggle with her school work. Her handwriting was nearly illegible and, worse, she couldn't recognize how far it had declined. Around the house, Laura asked her parents if they could bring her a bottle of water or fetch her laundry from the dryer.

"I'd look at her like, 'Come on, you can do that,' " Darlene said.

Laura insisted that nothing was wrong, but her parents began to believe otherwise.

"There was a lot of emotional suppression and anxiety," Darlene said. "That's hard to tease out because a lot of girls that are adolescent, they're going through so many things. They do act emotional sometimes. They do act moody sometimes. She wasn't all that different from her sister in some respects, and one's perfectly healthy and the other one, you know, has something really strange going on."

The biggest red flag, and ultimately, the moment that allowed the family to break through Laura's resistance, came on a walk Laura and Darlene took around the neighborhood in the spring of 2011. Laura fell twice, all the while pleading with her mother not to worry.

Her parents brought her to Greater Baltimore Medical Center and, after a myriad of tests, Laura was referred to Johns Hopkins' neurology department.

As the tests — and inconclusive results — piled up, doctors shared some of their theories with Paul and Darlene, who began their own online research. Darlene had an aunt with multiple sclerosis and Laura, then 21, was around the age where symptoms started to show. But that avenue proved to be a dead end.

Some of the signs pointed to a metachromatic leukodystrophy, or MLD, and the couple decided to attend a conference of the MLD Foundation in Hunt Valley in early June of last year.

Paul said it opened his eyes "just enough, just to the point where we didn't want any more information" on a "rare disease — degenerative, progressive and no known cure."

As they continued into the summer without a definitive diagnosis, Darlene drove to a doctor in Philadelphia to deliver a sample and pleaded with the doctor to deliver a diagnosis. The next day, they packed the car for a trip to Bar Harbor, Maine, and the doctor called back with the diagnosis.

Laura had MLD, a disease in which the body lacks an enzyme that breaks down buildup on the myelin sheaths that protect neurotransmitters.

Dr. Gerald Raymond, who has been treating Laura at Kennedy Krieger, said the disease eventually affects motor abilities, cognitive abilities and hearing.

Upon their return home from Maine, the family began to live by a new creed: Enjoy today, plan for tomorrow. Paul put in double railings on the staircases and grab-bars in the bathrooms. Eventually a ramp was built outside and a stair-glide was installed in to give Laura access to the second floor.

Those were accommodations for comfort and practicality's sake. Medically, there was one option.

There's no known cure for MLD, but Dr. Raymond said most success in utilizing bone marrow transplants to slow the disease occur in young adults. If a match is found and the transplant takes hold, the patient's cells are replaced by those with the enzyme that can protect the myelin and slow the disease's progress.

The Glaudemans didn't have to look far to find a suitable donor.

*****

As young girls, the 18-month difference between Emily and Laura was hardly an obstacle. The sisters were inseparable, striving to dress alike and spending endless afternoons on their backyard playscape and trampoline. As adolescence came, the girls who shared bunk beds as toddlers began to fight all the time.

Yet when their parents explained the diagnosis to Emily and Tim, both immediately volunteered to do whatever was necessary. Emily, it turned out, was a perfect match to donate bone marrow.

She thought back to a childhood memory when Tim, sensing that Laura was riding her bicycle too close to traffic, jumped out into the road, held out his hand and stopped the oncoming cars. Tim was convinced he had saved Laura's life that day. Now, it was Emily's turn.

"I'd do it 100 more times if I had to," Emily said.

The transplant took place on Sept. 16, 2011, after Laura underwent a round of chemotherapy at Hopkins, which was designed to suppress her immune system and prevent it from fighting Emily's cells.

Emily was discharged from the hospital that night, though the holes drilled in her hip to access her marrow laid her up for several weeks. It took several months for her to feel normal again. She returned to work and after caring for her sister for nearly a year, she plans to return to school this spring.

Laura spent 24 days in the hospital after the transplant. Darlene spent much of her time there during that time as well. The family would leave a cooler on the front porch so family and friends could drop off meals for Paul to heat up when he got home from work and also to bring to the hospital each night. Others gave gift cards for local restaurants, allowing Paul to pick up dinner on the way home.

When Laura left the hospital in early October, doctors recommended that she stay home as much as possible while her immune system rebuilt. A short time after her return home, the family received good news from her doctors: The transplant was a total success and 100 percent of Emily's DNA had taken hold in Laura.

"I feel like we're almost the same person now," Emily said.

*****

Sixteen months after the transplant, Raymond, Laura's doctor, said Laura continues to have some issues with her motor skills "because we're waiting for the transplant to have its fullest benefit.

"We need to keep optimistic that it is eventually going to arrest her disease," he said. "That's what we're really striving for."

In the interim, the family is living out its mantra of simply enjoying the day. Because her immune system has worked itself back up to a functional level, Laura has begun to make more frequent trips outside the house. Outings both large and small provide breaks from doctor's appointments and daily boredom.

She attended a 2012 preseason Ravens game thanks to tickets donated to her by the Towson-based Cool Kids Campaign, and has met and received autographs from countless Ravens stars over the course of her illness. Her Facebook photo features herself, Emily, Darlene and a mustachioed Joe Flacco.

Her eyes light up at the memory of driving a motorized shopping cart in Target on a recent trip with her mother and some of the Towson occupational therapy graduate students who have volunteered to visit with Laura. She delighted in the girls' suggestion that if she hit someone, the victim should be attractive and in his 20s. She also enjoys going to the movies and keeps up with the celebrity gossip each day on the website TMZ.

The family held a celebration in October 2012 to thank family and friends who supported them. be it with meals, shared moments or respites in past days like those in the future that will become more difficult as Laura's condition changes. The celebration was something of a coming-out party for Laura, a daylong commitment to owning her disease and showing the dozens of loved ones that it was affecting only her body, not her spirit.

Yet the largest undertaking thus far was a trip last August to the Hunter's Hope Family and Medical Symposium at a resort outside Buffalo, N.Y. The foundation was created in honor of Hunter Kelly, son of former Buffalo Bills quarterback Jim Kelly, who died in 2005 of a similar leukodsytrophy.

In the immediate aftermath of the diagnosis, Paul and Darlene thought it best to shield Laura from the harsh realities of the disease, especially those for whom the disease was further advanced.

Laura insisted, however, that she wanted to meet other people, young and old, who shared her plight, and she and her mother enjoyed a relaxing trip to Buffalo during which Laura got into a hot tub, made new friends and effectively became a part of the small community of people living with the disease.

After the trip, her father asked, "What did you want to go there and say?" and Laura was quick with her answer.

"My name is Laura, and I have MLD."

Copyright © 2014, The Baltimore Sun
Related Content
People (magazine)Jim KellyBuffalo BillsTargetMultiple SclerosisKennedy Krieger Institute
  • Laura Glaudemans' fight with MLD [Pictures]
    Laura Glaudemans' fight with MLD [Pictures]

    As Laura Glaudemans begins another chapter in her fight with Metachromatic leukodystrophy, a rare debilitating disease that affects the brain and central nervous system, her parents are using a milestone in her treatment as an opportunity to celebrate the outpouring of goodwill from friends,...

  • Emily and Laura Glaudemans hold hands during a visit. Emily spends devotes one day a week to spend time with Laura exclusively.

  • The Glaudemanses pose for a portrait in October. From left, are, Darlene, Tim, Laura and Emily.

  • Darlene Glaudemans, center, greets Tom Smith and his wife, Barbara Anne Smith, left, of Rodgers Forge, during the family's party Oct. 20 .Darlene and Paul Glaudemans used a milestone in the treatment of their daughter, Laura, as an opportunity to celebrate the outpouring of goodwill from...

  • Laura Glaudemans, left, visits with her sister Emily, 21, right, while listening to music during a party held to celebrate the anniversary of Laura's bone marrow transplant. Emily donated the marrow on Sept. 16, 2011, after doctors said the transplant would help stave off symptoms of...

  • Weekend backpack programs provide food for homeless students
    Weekend backpack programs provide food for homeless students

    Church of Holy Comforter to collect donations during Thanksgiving service

  • After 150 years, aim of St. Joseph hospital in Towson is still compassionate care
    After 150 years, aim of St. Joseph hospital in Towson is still compassionate care

    Important to continue healing 'presence' of founding Franciscan nuns, Sister Evelyn Grudza says

  • Community questions density of proposed Towson Mews
    Community questions density of proposed Towson Mews

    Towson Mews, a proposed development of 35 townhouses with two-car garages on 1.2 acres in East Towson, received a chilly reception at a community input meeting Monday night.

Comments
Loading