Champion for a Cause Area attorney helps organization with mission that hits close to home

By Jeanine Matlow Legal News By day, Kenneth J. Hardin II, a partner at Hardin Thompson in Bingham Farms, specializes in employment and business litigation. The Cooley Law School graduate is also a devoted family man who lives in Bloomfield Hills with his wife Kimberly and their four children, one of whom, Nicolas, was diagnosed with Hypohidrotic Ectodermal Dysplasia, a condition that affects the ectoderm or outer tissue. As Hardin explains, Nicolas has an inability to sweat, sports sparse hair, has two teeth that are conical-shaped, and carries a very fair complexion. The 2-year-old is prone to eczema and has certain facial characteristics such as a saddle nose, dark pigmentation around the eyes, and thicker lips. He also has a lack of mucus and bodily secretions such as tears. Though there is no cure for the condition, Hardin says hope is on the horizon for those who receive an early diagnosis. A vaccine that would deliver the missing protein needed in the DNA is in the works. As for Nicolas, he continues to face challenges such as avoiding the heat because his body cannot cool itself. "Fevers and the flu are more concerning in his case," Hardin says. Because the condition remains relatively uncommon, Nicolas was not diagnosed until he was about 8 months old. "There are 154 different varieties, though the one Nicolas has is pretty uniform so you know what to expect," Hardin says. "They look very much alike." Nicolas may have a rare condition, but he also has a great disposition. "He is a very tough individual," his father says. "He will tell you if he's hot. To him, he's normal." He can always count on constant support from the entire family. "The other children are instinctively supportive. They care for him very well," Hardin says. "Our daughter wrote a story last year about Nicolas that was absolutely remarkable." Hardin says the experience has made him more aware of the needs of others. Today he gives back by being Of Counsel to the National Foundation for Ectodermal Dysplasias as a volunteer. He reviews cases relative to the ADA (Americans for Disabilities Act). "I've learned from going to conferences that [those with the condition] do not view themselves as disabled," he says. "It's just part of life that they learn to accept. They learn to lead productive lives." One major challenge can be the enormous expense of dental care that may not be covered by health insurance. The cost can reach $150,000 in a person's lifetime. Hardin helps with cases like these and the NFED is very supportive, he says. As for Nicolas, "He's going to have a great future," Hardin says. "There are certain obstacles people have in life. You do what is necessary." His wife Kimberly agrees. "Nicolas is incredibly strong and he has a great sense of humor. He can spell his name and he knows his letters and colors." The genetic disorder may make him look different, she says, but he is still extremely normal in other ways. Nicolas loves sports and is very agile. Jodi Edgar Reinhardt, director of public relations for NFE. , says " For a condition that is very rare, it's common to feel like you're the only one who has it. We're here to help and to tell people they're not alone." She appreciates the help from the Hardin family. "Ken and Kimberly have been wonderful volunteers for our organization," Edgar Reinhardt says. "We are really grateful to them." They hope to hold a local fund-raiser in 2010. For more information, go to www.nfed. org. Published: Fri, Dec 18, 2009

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