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Matt and Patrice have to be very careful how they touch their beloved son, even though he touches their hearts every day. Jonah suffers from epidermolysis bullosa (EB), a rare skin disorder that causes his skin to blister or slide off at the slightest friction.
The couple lost their first child late in pregnancy. Two months later they conceived again, but when their baby was born his skin was missing in places and he was screaming in agony. “It wasn’t the normal newborn baby cry that you want to hear – it was agony.”
A pediatrician quickly diagnosed Jonah with epidermolysis bullosa, and told Patrice and Matt the bad news. There is no cure or treatment for the condition. “So is the only option prayer? Is that the only choice we’ve got?” Matt asked -- the doctor responded, “Yes.”
Jonah needs assistance in the bathroom, and his dressings must be changed three to four times a week. “There is no part of his body that doesn’t blister,” Patrice explains. Jonah also suffers internal complications, so he now has a feeding tube. “Jonah has never known a life without pain.”
However, Patrice says, “In spite of all the pain he goes through, he is just the funniest, most joyful, most charismatic little kid you’ll ever meet.”
Matt adds, “It’s kind of weird for a dad to say that their son is their hero, but Jonah definitely is my hero.” Says Patrice, “He doesn’t just survive – he thrives.”
ER Physician Dr. Travis Stork wonders how Matt and Patrice cope with not being able to hug and cuddle their son freely. “We’ve just learned how to do it,” Patrice explains. “We certainly don’t deprive him of touch or affection.” It’s difficult with Jonah’s four-year-old brother, though, who wants to rough-house with his big brother. “I just intervene a lot!” says Patrice.
Dermatologist Dr. Sonia Batra explains that there are several varieties of EB. In Jonah’s case, the upper layer of his skin, the epidermis, is not properly connected the layer below. So any touch can cause the two levels to shear and separate. Infection is a constant danger, and so is malnutrition because the body is constantly using resources to heal.
Patrice and Matt sponsor running events to raise funds for debra of America, the national advocacy organization for EB. “Most local doctors don’t necessarily know what it is either, so you have to have somewhere to turn and that’s what they are,” Patrice explains.
The Doctors have reached out to support their efforts. CVS Pharmacy and Mölnlycke Health Care have partnered to provide a year’s worth of bandages to debra of America! Molnycke will also provide a $1,000 CVS gift card to Matt and Patrice for Jonah’s medical supplies.
But the best surprise is for Jonah himself! The little boy loves cars and racing, and has a list of favorite NASCAR drivers. Now drivers Dale Earnhardt Jr., Jimmie Johnson, Danica Patrick, Jeff Gordon, Kyle Busch, and Chase Elliott, Kevin Harvick, Joey Logano, Kurt Busch, and Kasey Kahne have made a video to thank him for being a fan, and to invite him and his family to join them at the races!
“That’s totally awesome!” Jonah exclaims. And it's not just racing tickets – he’s going home with NASCAR t-shirts, caps, toys, and more. “Will all that fit in our suitcase?” he wonders. “This is amazing!”