- Associated Press - Monday, September 28, 2015

RIB MOUNTAIN, Wis. (AP) - Jerry and Som Sengkhammee sat stunned in August 2014 as a doctor told them that their 4-year-old daughter, Alanna, has a rare autoimmune disease that was sapping her strength and could never be cured.

Alanna had been sick for a while. “She had a low-grade fever for about a month and half,” said Som, 31, a nursing assistant at North Central Health Care in Wausau. Alanna also seemed to get tired quickly, and the Rib Mountain couple noticed that she had trouble lifting her legs.

After several visits to health care providers, a doctor eventually found that her upper legs were extremely sensitive to touch and ordered an MRI. That test revealed “inflammation throughout the (trunk) area,” Som said, and it wasn’t long after that the doctor was telling Jerry and Som that Alanna, now 5, had a disease called juvenile dermatomyositis, Gannett Central Wisconsin Media (https://wdhne.ws/1MzKYvd ) reported.

The disease is an inflammatory autoimmune disorder that affects muscles, skin and blood vessels, according to the American College of Rheumatology. JDM disrupts the lives of about 3 in 1 million children per year. No one knows the cause of the disease, and it’s never cured, only managed.

Since the diagnosis was made, the Sengkhammees’ lives have revolved around managing Alanna’s disease. They’ve been through a string of appointments with doctors in Wausau, Marshfield and Green Bay. Alanna has endured a regimen of steroid medications that has elevated her blood pressure and caused her entire body to swell. There was one life-threatening emergency that sent Alanna via medical helicopter to Ministry St. Joseph’s Hospital in Marshfield. Som and Jerry, 33, a worker at Kraft Foods in Wausau, say the disease now seems to have stabilized, and they hope that further refinement of steroid doses will mean that Alanna will be able to live a relatively routine life. But they are left with many worries - and a passel of medical bills.

Enter National Mutual Benefit Branch 3, a Wausau-area chapter of a nonprofit life insurance organization based in Madison. The Sengkhammees are members of the organization. Som was in the National Mutual Benefit office a few months ago, and Alanna’s disease came up in the course of a conversation. The next day, a representative from National Mutual Benefit called the family and asked if it could organize a benefit to raise money to help the family.

Mary Holm, a National Mutual Benefit board member and retired agent, said the organization holds benefits each year for a variety of causes. Last year the organization raised money for Randlin Homes, a Wausau nonprofit that helps veterans in need. Typically the National Mutual Benefit fundraisers garner about $10,000. The organization will match up to $2,500 for money raised.

The Sengkhammee family was an obvious choice to be recipients of this year’s benefit, Holms said.

Alanna “is just a sweet little girl. She’s shy at first, but once she sees you for a while, she warms right up,” Holms said. “We just want to take some of the stress off (the family’s) lives, so they don’t have to worry so much about missing work and trying to pay bills.”

The family has health insurance, but the costs of Alanna’s treatments have exceeded the plan’s coverage. The family is left with thousands of dollars of medical debt, Som said.

The money raised at the Sept. 26 benefit will help the family offset some of those costs, but also help with other associated costs, such as travel and wages lost due to missing work, Holm said.

Alanna’s journey to health is not finished. The doctors are slowly lowering the doses of the steroids to find the right amount that will help Alanna gain and maintain strength. But there are side-effects, such as swelling and high blood pressure, which also needs medication. The family also must make regular visits to physical therapists.

The illness saps muscle strength, but Alanna’s spirit is strong, Jerry said.

“She has been a positive girl from the time she was born. There’s no negativity about her,” he said. “We’re just always going to have to be devoted to keeping her healthy. It’s emotionally challenging, but she helps us.”

___

Information from: Wausau Daily Herald Media, https://www.wausaudailyherald.com

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