Due to a Rare Disease: Mother Cannot Hug Her Infant Son

Lennon Gregory from Masontown, Pennsylvania, is only five months old but since birth, he has been diagnosed with a rare condition called epidermolysis bullosa, or 'butterfly skin.' His skin is so fragile that even a hug from his mother can leave him with painful blisters. 

According to Shelby, his mother, the simplest acts such as changing a diaper, bathing, and feeding can cause his skin to tear and 'burst.' If the blisters are not cleaned immediately, the infection within them could be life-threatening. Despite this, Shelby shares that her son is "the happiest baby in the world. I don't understand how someone can endure so much and yet be so happy as if nothing hurts," she said in an interview with the 'Daily Mail.' 

This is a condition (often genetic) characterized by extreme skin fragility, where any trauma or friction causes painful blisters that take time to heal. This occurs due to a severe deficiency in collagen, a structural protein found in our connective tissues that allows for elasticity and flexibility. In the United States alone, 200 children are diagnosed with this condition each year, but in Lennon's case, it was only discovered after he was born, not during pregnancy. "We had a completely healthy pregnancy, and there was no reason to suspect that my baby would be so ill," Shelby explains. "Even after his birth, everything seemed normal at first. But when the doctors brought him back to the nursery, they told us there was something wrong with our baby and that he was developing some kind of blisters. Initially, it was suspected to be due to herpes or another infection."

However, when the blisters started to spread all over his body, the doctors removed his socks and immediately understood. "There were 'tears' in his skin from the ankles, and the doctors isolated him immediately. They knew it was something very serious."

Regarding coping with the condition, Shelby says, "Suddenly everything I thought I knew about being a mother has changed. My baby takes many medications every day, and several times a day we have to pop his blisters with special medical treatment using disinfectants and oil on the skin. But my husband David and I are confident that everything will be okay and that we will beat the disease. We take things calmly and learn something new each time."

"We can only bathe him once or twice a week, and when we do, we need to use a soft sponge and add a little bleach to the water to kill infections. Lennon loves bathing very much, but he likes the bleach less."

Shelby draws strength from a group of mothers with children who have the same condition, where she receives important information, advice, and encouragement. "The other mothers in the EB group are amazing, and I really don't know what I would do if they weren't there to provide the mental support I need," she says.