Gramma Elsa': UCC member committed to helping those with rare skin disorder

Gramma Elsa': UCC member committed to helping those with rare skin disorder

October 31, 2004
Written by Daniel Hazard

Elsa Seifert has taken on many important roles in her life but, since June 23, 1996, she's been "Gramma Elsa" to her only granddaughter, Megan Rose Stewart.

Not unlike most grandchildren, Megan knows well her grandmother's love, but she's also benefi ting from Seifert's all-out campaign to ensure her life is the best it can be.

"Megan is affected by a rare skin disorder [from birth] known as large congenital melanocytic nevus and neurocutaneous melanocytosis," says Seifert, explaining the big-word condition means a person's "melanin distribution process went awry."

In lay jargon, Megan has one large continuous "birthmark" or growth that circles her front and back, reaching from the middle of her chest down to her knees. It is accompanied by various large nodules and some hair growth.

Seifert says Megan also has many "satellite spots" on other parts of her body—arms, legs and face. In all, 60 percent of Megan's eight-year-old body is covered with these markings.

The condition—called "nevus" for short Ñ can affect all races, genders and nationalities, and in some cases, the spots are extremely large.

Seifert explains that the condition develops during the fi rst trimester of pregnancy, although it's still unclear why it happens. "[But] it's not ascertainable prior to the actual birth," she says.

Megan's parents, Mark Beckwith (Seifert's son) and his wife, Kathy Stewart, who live in Bartlesville, Okla., were perplexed when their daughter was born. The obstetrician was noticeably silent. In a blur, nurses, cradling Megan, scurried by. Stewart noticed her baby's lower body and legs had something dark covering them but, in all the chaos, she thought they had put shorts on her infant.

Stewart and Beckwith waited for an explanation and information from the doctor. Megan's physician, however, could only hand the couple an antiquated report that implied—falsely—that affected children would die. The new parents were led to believe that their daughter would not live beyond two years. For the next 24 hours, Stewart wept.

Seifert, a member of Altadena Community UCC in California, could not believe the lack of information provided to her son and daughter-in- law. And since that day, she's been working to make sure that other parents receive up-to-date and correct information. She's devoted her life to raising funds and awareness for research, treatment and prevention.

A year after Megan's birth, her parents, along with two other families, started Nevus Outreach, Inc., (NOI), a nonprofit organization dedicated to the "awareness of the condition, support for those affected and a cure for the disease."

"Gramma Elsa" quickly got involved. Seifert took on the organization's financial aspects, including fundraising and its 501(c)(3) not-for-profit compliance.

Since 1998, NOI has facilitated four international conferences in various locations across the United States. The gatherings have been well attended by those affected as well as friends and family members.

"We have people coming from all over the world. The conferences provide individuals with new medical information and counseling for self-esteem issues," says Seifert, who also serves as editor the UCC's Southern California-Nevada edition of United Church News.

Despite its home-grown origins, NOI has become a large effort. "We have a really broadbased group of volunteers and our board of directors [comes] from all over the country," Beckwith says.

For the past several years, Seifert has represented NOI at the annual National Institute for Arthritis, Musculo-Skeletal and Skin Diseases (NIAMS) Day, a time when a coalition of organizations work together to bring awareness to various diseases by traveling to Washington, D.C., and speaking to members of Congress.

"We speak personally about our relationships within our own organization—in my case, Nevus Outreach," Seifert says.

Now that it has grown and is taking on wider directions, Seifert is handing her financial job over to a new volunteer, but she says, "I hope to be more available for more fund-raising and educational efforts with exhibits at various conferences dealing with skin disease and its implications."

A special "nevus quilt" has been sewn by the hands of affected families from all over the world. Each piece, Seifert says, is a 12-by-12-inch square made with love and personality. Megan's swatch contains an embroidered yellow rose, with her name appearing in "her" square.

"This quilt has been on display in so many places," says Seifert, "health fairs, conferences, hospitals—any public place where we can spread the word."

Distance prevents Seifert from seeing her granddaughter as often as she would like. However, last summer, she was able to spend quantity and quality time with Megan when she played "babysitter" while her parents attended a convention.

"[That] was the longest time we have been on our own together at my house since she was born. What a wonderful and precious time!" says Seifert.

A bright, wonderful, spontaneous child, Megan thrives around other children.

"Though Megan is home-schooled, she has numerous opportunities to be with many other children," her grandmother says. "She loves other kids, is very comfortable around them, and they love her."

Though there is no known cure for a nevus, Megan has undergone surgery to abate some of its effects. "There were some more dangerous nodules close to her spinal column that had to be removed," says Seifert. "Laser surgery was performed to remove some of the spots, however, most have reappeared."

Seifert says Megan's parents don't dwell on those things. They're more concerned with making sure she gets to her piano and ballet lessons on time, helping with her homework, and maintaining her social calendar by penciling in the many birthday parties to which she has been invited.

"We want people to know whatever they are dealing with," Stewart says, "you don't have to be alone. You just have to make yourself available to people and they will find you."

Gayle Elizabeth Starling is a writer and the editorial assistant for United Church News. 

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