Local family hosts charity boot camp

When Dorian and Wynn Johnson were born, their parents never dreamed they would only have eight years with their boys. However, instead of dwelling on what they can't change, the Johnson's are trying to make a difference.

At six weeks old, Dorian and Wynn were diagnosed with Mucolipidosis II (ML II). The terminal illness slows down growth and delays development of motor skills. Children with ML II usually have enlarged livers or spleens and sometimes heart valves. Children with the disease don't often live past 7 as a result of congestive heart failure or recurrent respiratory tract infections.

"My boys are 3 ½ years old, but they still look like babies," Johnson said. "Because of this disease, they have heart and breathing problems and joint problems. We don't know if they'll ever be able to walk or crawl. But they do have their days when they're normal 3-year-olds. They both have personalities and even get in trouble."

Johnson said all during her pregnancy, everything was great. After her boys were born, the Johnson's were told that something was wrong, but the doctors didn't know what it was.

"It took the doctors six weeks to figure it out. They made calls all across the nation," Johnson said. "It was a big, big shock to my husband and I, and it's been an eye opener. I have to celebrate all the small things my kids can do. They like to roll around, and they're very fast. This disease has made us realize what's truly important and made us focus on what we can do, not what we can't."

As part of focusing on what they can do, the Johnson's enlisted the help of trainer Jennifer Reid from Live Wire Fitness, to help with an MPS charity boot camp. The camp will be held from 8:30 to 10 a.m. Saturday at Castle Hills Village Shops, 2560 King Arthur Boulevard. Registration is $30 for families and $15 for single adults and may be completed at www.goactive.com key word castle hills. Registration will remain open until the night before the camp, but those interested may come to the camp and register. Johnson said people should wear comfortable clothing for the boot camp. Water and exercise equipment will be provided.

"We're calling it a family event. We will have a section for children's exercise that will include fun activities such as freeze tag and red light green light. It will be fast playing for them. We will also have face painters, the Chick-fil-A cow and we will have DJ on stage with the trainers," Johnson said. "For the adults, it will be a real boot camp. This will serve as a great example for children to see their parents working out and doing something outside."

Johnson said the boot camp is open to all levels of fitness. Three trainers will run the camp. It is also open to those with injuries and/or bad knees or backs.

All proceeds go directly to the National MPS Society that supports research, helps support families and increases public awareness of the disease.

"The money will go directly to the society. There are so many families in our position who need the help," Johnson said. "We're fortunate enough that both my husband and I work, and we have insurance. The society does a great job providing grants for research and helping families."

Reid came up with the idea to do a boot camp for a fundraiser because of Johnson's time on the television show "The Revolution." Johnson appeared on the show and worked out with Reid to lose weight.

"Especially with me being on the show, the passion for fitness has stayed with me," Johnson said. "My whole family will be there, including the boys who will be lounging around."

Johnson is also the mother of 8-year-old twin boys who are perfectly healthy.

"This disease is genetic, and both my husband and I both have the gene, but we never knew it. We're very lucky because our older boys could have had it," Johnson said.

Right now there is no cure for ML II, but there are treatments.

"The boys get treatments for their heart and respiratory issues. The babies are very stiff and not as flexible as other children, so we always have to keep in mind what they're able to do," Johnson said. "We're really happy that considering what the boys have, they've been pretty healthy."

Johnson said she and her husband know they only have a short time with their babies, but it's not something they choose to think about.

"We'll have to go through the loss twice and to think about it -- it's really just too hard to think about it," Johnson said. "A lot of times, we feel like we're in our own little planet because the issues our children face are so alien to what most parents go through. So being able to connect with other parents through the society has been a great support system and way to bounce things off each other."

For information visit www.mpssociety.org.

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