Awareness Fundraiser Planned—

After Myositis Deals Three Strikes,

Newtown Child Fighting Back Again

By John Voket

As the freshness of a new school year quickly morphs into a grind of reading, testing, homework, sports, and other activities, students may find themselves already looking forward to the Thanksgiving break. Middle Gate School fourth grader Enely Sokk, however, is looking bravely toward a second round of intensive chemotherapy treatments.

That grueling week-on week-off, week-on process, her family prays, will arrest the symptoms of myositis that Enely has been living with since the first few weeks of school just three years ago.

“Up until September 2004, our daughter Enely was like most other little girls,” recalled he dad, Arno. “She attended preschool and kindergarten, took dance lessons, had lots of play dates with her friends, and loved being a big sister.”

That all changed couple weeks into the next school year when she started first grade at Middle Gate Elementary School.

“She had trouble getting out of bed in the mornings and was too tired to go to school,” Mr Sokk said. “When the rash appeared on her face, we knew this was more than just the difficulties of adjusting to a full day of school.”

Her condition deteriorated at a rapid pace, as Enely first struggled going up stairs and began having trouble getting dressed and brushing her hair. Two months of different types of tests and seeing various doctors finally led the family to a rheumatologist who diagnosed Enely with juvenile dermatomyositis (JDM).

The rheumatologist started her treatment with oral steroids (Prednisolone) right away.

Since her subsequent blood tests were worse, more aggressive treatment of Solumedrol (another steroid) and methotrexate (chemotherapy drug) were added, being administered through a PICC line. Her muscle strength deteriorated further, so that she only attended school half days and needed a wheel chair to go between classes.

“Lack of improvement caused us to be skeptical about the diagnosis and treatment,” said Enely’s mom Riina. “We saw other doctors for additional opinions and we had Enely checked for Lyme disease. We were told that Enely has ‘old Lyme’ and that it has no connection with JDM, although her current rheumatologist indicated that Lyme disease may have been the catalyst for her disease.”

In spring 2005 Enely was started on two more medications, from one of which she contracted aseptic meningitis.

“That was one of the scariest moments during this ordeal,” Mr Sokk said. “We brought Enely to the emergency room in Danbury Hospital. After numerous tests she was transferred to CCMC in Hartford for treatment and additional tests.”

Starting May 1, 2005, Enely herself noticed that she had the tiniest bit more strength. Her strength continued to improve through the summer so that she was even able to hike up the steep quarter-mile trail at Kent Falls.

Another Setback

But then a few weeks into the start of the new school year, Enely started showing signs of weakening. The dosages of current medications were increased and later one new medication was added, but Enely did not show signs of improvement until spring 2006.

“Although we noticed her trend of improving in the spring and declining in a fall, her doctor did not agree with our observations,” Ms Sokk said. “During the spring, summer, and even fall of 2006, Enely’s strength and endurance was the best it had been for almost two years. She rode her bike and scooter and even started to run a little bit.”

“It was amazing to see her level of mobility,” Mr Sokk added. “Sometimes we had a feeling that Enely’s JDM was behind us.”

As Enely started third grade her physical strength did not get worse as in the prior two years, but again the family noticed another physical decline just before Christmas 2006.

“We started seeing a new doctor who adjusted her medications. During the month of May of this year, Enely was in the hospital to receive a new more aggressive chemotherapy treatment,” Mr Sokk said. “We will return to the hospital with Enely in November for a second chemotherapy treatment. We’re all just hoping that she will respond to the medications and her JDM goes into remission.”

According to Mr Sokk, myositis is a disease that does not discriminate. It affects young and old alike. Juvenile myositis (JM) — including juvenile dermatomyositis, juvenile polymyositis and juvenile amyopathic dermatomyositis — is a family of rare autoimmune disease that affects approximately 5,000 children in the United States.

JM attacks children of all ages, causing a variety of debilitating symptoms, including muscle weakness and pain, severe fatigue, rashes, swallowing and digestive difficulties, lung and heart problems, vasculitic ulcers, and calcinosis, he explained. Weak muscles and skin rash are the primary symptoms of JDM, while muscle weakness without a rash is the primary symptom of JPM.

Children afflicted with AMD, on the other hand, experience the skin rash without the weakened muscles. Even within these three designations, JM affects every child differently. Some children experience a mild form of the disease, while others follow a more severe and potentially more debilitating course. Adults also experience various degrees of severity of the disease, Mr Sokk said.

Ms Sokk said she is hoping an increased awareness of the condition will help foster greater understanding and empathy in the local community.

“It’s terrible when children, and especially parents or total strangers, stare at Enely and then make some rude comment about us not giving her enough sunscreen,” Ms Sokk said. “Or when children are told to stay away from her because they think she has poison ivy.”

Causes And Cures?

Since it is not known what causes myositis, there is no known cure. Some people may experience a remission, while others will battle myositis their whole life, and some will bounce back and forth, Mr Sokk said. The complications from this disease can prove to be fatal, he said. Some medications have been effective in alleviating the symptoms, but, as stated before, there is no known cure.

That’s why on the weekend of National Myositis Day (September 21) the family and supporters at a local gym are pulling together for an awareness and fundraiser for The Myositis Association.

“The MA provides support groups that bring people locally as well as nationally together to help them in dealing with the disease,” Mr Sokk said. “We have been able to get additional information about the disease, proposed treatments, and find out from others what works and doesn’t for others.”

Ms Sokk said her friends and family, including Cody and Jennifer Foss of The Fitness Loft, really want to raise awareness of the disease.

“It’s something that we knew nothing about until we were faced with it ourselves,” Ms Sokk said. “And the money that is raised from this benefit will be specifically earmarked for research for myositis.”

The series of fundraising activities for The Myositis Association include a Spinathon September 22 from 9 am to 3 pm at The Fitness Loft on Simm Lane just below Newtown Car Wash off South Main Street. The Fitness Loft will donate 100 percent of the proceeds from the Spinathon.

A Silent Auction will be ongoing September 21–22 at The Fitness Loft featuring items and services donated by individuals and local businesses. Bella Photography will also hold 15 minute sessions for family and individual portraits with sittings September 20–21 between 9:45 am and 1 pm at The Pleasance.

Kate Bellagamba will donating all profits from the sitting. Package prices will be determined based on clients’ desires. Time slots will be posted.

Call 364-0470 or e-mail asokk@charter.net to help with organizing this event, donating items or services, or to sign up for a Spinathon slot or photo session. For more information about myositis, view www.myositis.org.