‘Butterfly Baby’ ready for first Christmas, fights rare medical condition

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INDIANAPOLIS, Ind. – A young Hoosier’s fighting a battle against an illness many of you likely have never heard about.

Kelsey Townsend’s eight-month-old daughter Lilah suffers from a rare condition known as Epidermolysis Bullosa, also known as EB. The condition causes painful blistering, and Lilah requires constant care.

“The first few months were impossible,” said Kelsey Townsend ,”At birth she didn’t have any skin on these hands, so now that we’ve worked it back to skin, we’re trying to keep it on.”

Lilah’s tiny fingers wrapped up tight are signs of a big problem that first became apparent at birth.

“As soon as she was removed, the doctor and everyone in the room was quiet,” said Townsend.

When Lilah was born, she had no skin on her hands or feet. Doctors later determined she has Epidermolysis Bullosa. It is extremely rare , with about 200 children a year born with it.

Lilah is missing the protein that anchors her skin to her body, making blistering common and painful. It takes hours to ensure her bandages are properly applied and cared for. She even gets blisters on her esophagus.

“If you touch it wrong, if she bumps it or somebody rubs it incorrectly, that skin is either going to blister and fill with fluid, or it will slough off completely,” she said.

Townsend’s spent the eight months since her daughter’s birth trying to care for her and trying to raise awareness of the disorder that she never knew existed.

“We need support, and we need awareness. And we need a cure, and we need it today,” she said.

Townsend’s found strength from families of other children across the world with the condition, starting a Facebook page called “Love for Lilah-Butterfly.”

Those children are called ‘butterfly babies’ because their skin is so fragile.

“Their skin is as fragile as a butterfly’s wing,” Townsend said, “The butterfly is also a sign of hope.”

Winding Ridge Elementary also adopted Lilah as their sparrow, through Sparrow Clubs, USA. The program allows groups to help other children with medical conditions.

As Lilah gets ready for her first Christmas, Kelsey said her daughter’s given her so much, despite her medical difficulties.

“I’ve found my faith, and I’ve found my support in my family and all of these things I attribute to Lilah for sure,” she said.

For more information about EB, you can visit The Dystrophic Epidermolysis Bullosa Research Association of America (DEBRA)'s website by clicking here.

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