Aug. 7, 2006
Waverly family in marathon to find cure for JM
By Linda Scherer
Because of a reaction to a medication that he was on, Blake Posch, a Waverly 6-year-old, spent most of June 17 in a hospital emergency room.
However, that did not keep him from mutton busting, much like bronco busting except with sheep, his favorite thing to do, at the Buffalo rodeo that evening.
Blake was recently diagnosed with a rare disease called dermatomyositis in April after showing symptoms for almost three years.
Dermatomyositis is a form of juvenile myositis (JM) that attacks children of all ages, causing a variety of debilitating symptoms including muscle weakness, severe fatigue, swallowing and digestive difficulties, and lung and heart problems.
Unique to dermatomyositis is a skin rash that usually occurs on the face, knuckles, elbows, knees, and ankles. The rash may appear before, after, or at the same time as the muscle weakness.
Blake does not feel sorry for himself, and he shows courage that many adults would be not able to display under similar circumstances.
A great deal of Blake’s tenacity comes from the strong support team he has, beginning with his parents, Kevin and Lisa (Kutz) Posch, his brothers, Brandon, 13, and Cole, 11, aunts, uncles, cousins, and friends.
“Blake knows there are a lot of people he can turn to and they are there for him,” Lisa said.
The family has decided that one of the best ways to help support Blake is to participate in the LaSalle Bank Chicago Marathon in Chicago, Ill., Sunday, Oct. 22. The money raised will go to the Cure JM (juvenile myositis) Foundation.
The Cure JM Foundation is a non-profit organization that was created specifically to find a cure for juvenile myositis, while providing support and information for families suffering from JM.
Five of Blake’s family members will be part of the actual marathon, and an additional 20 family members will be traveling along as volunteers, who keep the runners running smoothly during the marathon and raise additional donations. In addition, some family members will just be there to cheer the runners on.
There are 40,000 registered marathoners, with a total of about one million people participating. Blake will be handing out Gatorade at one of the 17 aid stations.
The 26.2-mile marathon will pass through 15 Chicago neighborhoods and dozens of landmarks. The marathon closes six hours and 30 minutes after the official start.
Juvenile Myositis (JM)
There is no cure for JM yet. The disease affects approximately 5,000 children in the United States. Medication can put the disease into remission. Some children experience a mild form of the disease, while other children suffer much more severe, debilitating symptoms.
Working with doctors from the University of Minnesota, the Posches are still trying to figure out a medication that will work for Blake.
Posches’ doctor has said that it may take up to six years to get him into remission, and then, there is no guarantee that he will not have flare-ups or that the disease will not come back after getting a bad sunburn, or virus. Even puberty could send him into a very active state, and then Blake would have to start all over again.
He currently has weekly infusions including a chemotherapy drug, and he has been experiencing migraines usually the night after the infusion and the next day.
The doctors have also found that his skin rash is aggravated by the sun, so they try to keep him interested in indoor activities during the day, from about 10 a.m. until around 6 p.m.
“They will probably be switching around his medication, which it sounds like everybody has to do, but a lot of it is medication that wipes out their immune system,” Lisa said.
“The sad thing was that we didn’t notice at first because it was skin. At first we thought it was dermatitis. His brother has eczema,” Lisa said.
“It wasn’t until December that he got the rash on his face. I had made an appointment with a dermatologist and the dermatologist diagnosed him in about five minutes. That was the week before April 26 and the next week, we had him in to see a doctor at the University of Minnesota,” Lisa said.
“Blake attended full-day kindergarten, but he missed a lot of school. He would be so tired he would sleep four hours straight in the morning, or he would have headaches. We will send him to first grade, but he will be missing two days a week for infusions,” Lisa said.
“He does have strength in his legs now so he can ride a bike, which he was not able to do, but he still has some weakness and they would like to see him be able to do a sit-up,” Lisa said.
Blake’s parents have been open with him about his illness.
“I think he should know what he is going through. He knows that he has something different,” Lisa said.
The support of family and friends means everything right now. Lisa has been in day care for 12 years and her day care parents have stepped forward to help, too.
“I am so thankful for people like my day care parents and my family who care to take the time to help!,” Lisa said.
Like her other family members that are participating in the marathon, Lisa is in training for the October fundraiser.
She is a little apprehensive about the distance, but she continues to walk every day in preparation for the big event.
“I can do this,” Lisa said, “because I just think of what he has to go through and it is something I can do for him.”
To make a donation to Cure JM foundation:
Go to www.curejm.com and click the LaSalle Bank Chicago Marathon Logo for a list of people who are participating in the marathon. Blake’s family members are:
• Erin Weber Kutz,
• Crystal Kutz Long,
• Lisa Kutz Posch, and
• Kevin and Holly
Or, you can donate by check or money order to: Cure JM Foundation, PO Box 2223, Mansfield, TX 76063
If you would like more information regarding the marathon or have any questions, call Lisa Posch at (763) 658-4159 or e-mail her at firstname.lastname@example.org.