Young Girl’s Parents Raise Funds To Fight Daughter’s Disease

By Kendra Bobowick

Arno and Riina Sokk are doing what they can for their daughter. She has a condition, called dermatomyositis, that causes a rash.

Enely Sokk, 9, is often misjudged at first glance. “People look at her and don’t know what’s the matter,” her father said. “People make comments. It’s hard for her and hard for us. We’re not bad parents.”

Mingling with passing glimpses of curiosity is an occasional stare, but few people realize what is wrong with the couple’s little girl. She has juvenile dermatomyositis, and has been living with its complications for the last several years. 

Last weekend, Mr and Mrs Sokk were at The Fitness Loft., where owners Cody and Jennifer Foss has donated time and space for a spinathon and silent auction to benefit Enely.

“We obviously like to help those who need help,” said Mrs Foss, who is also a nurse.

Talking about his daughter, Mr Sokk explained that the rashes on her face, for one, are a condition of the dermatomyositis. Based on information in a flier he provided to guests that day, the dermatomyositis is a chronic inflammatory muscle disorder. For this rare form of myositis, the underlying causes are not known. Dermatomyositis affects any age and gender, but is more common in women. The disease causes a visible skin rash that often occurs on a person’s face, is the source of general tiredness accompanied by trouble climbing stairs, and can cause dry or rough skin.

During the daylong spinathon on September 22, Mr Sokk welcomed and greeted those who were interested in participating in the spinathon or make a bid on one of several gift baskets and other items on display for a silent auction. He is hoping for answers.

“The whole thing is to raise money for research,” said Mr Sokk. “The main thing is we want money for a cure, but we don’t know what causes it.”

With fliers within reach, he explained another goal he had that day.

“We’re trying to raise awareness in the community. Not many people know about it.” Thinking of the hurtful glances, he said, “We want to raise awareness. This isn’t a disability that people are accustomed to.”

A third part to the fundraiser was rescheduled from its original Sunday date of September 23, and is now set for Sunday, September 30. Photographer Kate Bellagamba will be donating profits for portrait sessions directly to the myositis foundation. Ms Bellagamba will be running 15-minute session between 10 am and 2:30 pm at The Pleasance on Sunday.

Since her diagnosis several years ago, Enely, a Middle Gate School student, has lived through an ordeal. She at first struggled to get out of bed in the morning, had trouble going up stairs, getting dressed, and brushing her hair. She attempted steroid treatments and after several months chemotherapy drugs were added to her regiment.

In the past several years she has gone through drug therapies with various results and reactions. She will enter a second chemotherapy treatment this fall.

Juvenile Dermatomyositis is among a family of rare autoimmune diseases that affects roughly 5,000 children in the United States and can cause a number of debilitating symptoms, weakness, pain, and organ problems.

Additional information about the condition is online at myositis.org. For additional information about fundraising efforts or to schedule a portrait sitting for Sunday afternoon with Ms Bellagamba, contact Arno and Riina Sokk at 364-0470 or ASokk@charter.net.