Growing up in a small town in western Kansas, Tina Baalman dreamed of being an artist, pouring her soul onto canvases in an isolated studio. Today, those dreams of tranquil isolation have vanished, but she still wants to paint one particular picture for the world to see: that of a child with a rare disease and the anguish of that child’s parents.
Baalman, 28, of Hoffman Estates, hopes to achieve her goal through her work with a support group she formed when she couldn’t find much information about a rare disorder afflicting her daughter Elizabeth. Elizabeth was born in October 1992 with lymphatic malformation, formerly called cystic hygroma.
The disease, which strikes only one in 5,000 children, is characterized by hyperactive lymph glands that create disfiguring patches of cysts, usually in the chin and neck areas. Because the hyperactive glands are like sweat glands that do not sweat, Baalman said, the resulting cysts potentially can cut off airways and be fatal.
Until Elizabeth’s birth, Baalman, her husband, Mike, 29, and two children, Lauren and Patrick, now 7 and 5, lived an uncomplicated life. But Elizabeth’s disease has changed their lives completely.
“It was a real shock that something was wrong,” Baalman recalled, “and to find out a little more about the disorder as it went along, the more it made us think how her life was going to be when she got older and what we were going to be going through as parents and how we would teach her to live with it were the thoughts that were going through our heads.
“She had her first CAT scan, and the doctor told us that there were tumors in her neck.
“Both my husband and I have a lot of cancer in our families; when we heard tumors, we initially thought cancer. So the doctor reassured us that these cysts would never become cancerous. They would always remain benign.
“I was very relieved because that is my greatest fear. And so that made us feel better, and it was the thought of our child going through continuous surgeries and possibly being disfigured that was a real heartbreaker.
“When Elizabeth was in the hospital, I sat there and I tried to talk to the doctors and ask them as many questions as I could, and every time they’d come in I’d have a page full of questions for them to answer. It was really hard to get information out of them because they really don’t know much about this disorder to tell the parents. And then going to the library in the hospital and there being nothing and the doctors not even having a pamphlet to give me was frustrating.”
Baalman said a specialist in the area of lymphatic malformation has informed her that there will be no research on the disease for at least 10 years because it is so rare and there is no money to support research.
“It’s not a priority” for government and medical researchers, Baalman said.
But it is for her.
Baalman contacted a support group for mothers in Wisconsin and was put in touch with two other parents who had children with lymphatic malformation.
“But it seemed like the more I hunted for information, the less I found,” she said. “It became frustrating to me that I have a child with a problem and there’s no information to tell me about this. And that right there gave me the incentive just for my child’s sake to try to help her out because she has to deal with this for the rest of her life. And so I started the only nationwide group in the United States for children with lymphatic malformation.”
Dr. John Mulliken, associate professor of surgery at Harvard Medical School, said that while the disease can affect most parts of the body, it is most likely to cause severe problems when the spongelike growths are located in the neck and head area.
Surgery sometimes corrects the condition, but more often the growths return, Mulliken said. The more extensive the lymphatic malformation, the more likely it is to be fatal, he said.
Baalman said she feels very lucky because her daughter’s cysts are around the base of the neck, extending down the chest and into the left armpit area, all of which can be covered by clothing. Many of the children who have the disease are more seriously afflicted than Elizabeth, her mother said. Their faces are commonly disfigured and some have difficulty eating and need multiple surgeries.
“The stressful times are when she gets sick,” Baalman said, “when she had pneumonia and was in the hospital.
“It’s stressful not only for her but for the other kids because they don’t understand, and so you try and tell them what they don’t understand about it.”
At 3 months, Elizabeth had her first surgery at Children’s Memorial Hospital because the cysts were beginning to close off the airways. At first, Baalman didn’t know where she would find the strength to handle her child’s sickness, but it just happened naturally.
“I found it within myself and could remember my mother telling me that. Once I was with my mom, and we saw a baby in an incubator and I said, `I just don’t know how I would handle it,’ and she told me, `You would find the strength and you would handle it.’
“During Elizabeth’s first surgery, we were in and out of the hospital for 20 days at a time.”
There were times when Baalman did not think her child would pull through after the surgery, and she said she spent most of her time by Elizabeth’s hospital bed. Her husband, a construction supervisor, shortened his work days to “take over and play mom” for the other two children.
By the age of 1, Elizabeth had been in the hospital 40 times. Now 21 months old, she has had three surgeries, and things are looking brighter for her, her mother said. Baalman describes her child as a “very active, happy little girl” who loves to play in the yard and ride with her parents on a bike.
So for now, Baalman, who had once planned to attend art school, is out drumming up support for children with the disease and educating the public about it through the support group she founded last summer, Children Anguished with Lymphatic Malformation.
A year later, the group has 17 members nationwide. Baalman says their top three goals are to get information out to the public and in doctors’ offices, to find families such as hers and bring them together so they can “at least talk to someone who is going through the same thing” and “to get hold of Bill and Hillary Clinton to get some support in the way of research.
“We want to educate the children, and we want to educate the parents. We want to teach parents to teach their children to have compassion for other children who don’t look just alike.”
So Baalman’s support group has embarked on fundraising activities that have netted them a few thousand dollars, a long way from the $2 million she says is needed to begin research.
Baalman has written numerous letters to media outlets, including national magazines and talk shows. She recalls one news magazine editor’s telling her that she wasn’t big enough for that publication yet.
“And I was like, `Oh, great; well how do you get to that point?’ You get going so good, and then you hit a wall.”
Baalman has also heard unenthusiastic responses from talk show producers, but she said her commitment mounts with each accomplishment, whether it is educating people at a fundraiser or getting a phone call from a New Zealand family who has learned about her efforts.
She has worked with Mulliken, author of the medical book “Vascular Birthmarks-Hemangiomas and Malformations,” to put together a pamphlet for the public.
Through her correspondence, she encourages support group members to write to talk shows to promote their cause. And through her newsletter, Baalman keeps members abreast of what is going on with the children.
An example is Jason Arnot, 8, of Camby, Ind., who at 19 months had had two-thirds of his tongue removed. Every six to eight weeks Jason has cysts removed from his mouth with an electric needle. The resilient boy now enjoys karate, football and swimming in spite of his battle with the disease.
And Baalman tells about Matthew Nissley, 5, of Columbia, Pa., who last winter was in surgery to have his tonsils removed to give him more room in his mouth.
“Keep Matthew Nissley in your prayers and thoughts,” she wrote members in the newsletter.
“I do this work for the parents and for all the children,” Baalman said of her persistence in trying to get publicity and raise money for research.
“We want to push the issue of research to find a cure so that some day my child and other children can sense some relief with this disorder. I’m hopeful that we’ll be able to help the children from becoming very ill from this, so when I get rejected it pushes me to try even harder. I will do this as long as I can, probably until the day I die.”
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For more information, contact C.A.L.M., c/o Tina Baalman, 110 Des Plaines Lane, Hoffman Estates, Ill. 60194; 708-882-7165.
