Lilah was born on April 17, 2015, with Recessive Dystrophic Epidermolysis Bullosa (RDEB), a disease in which the skin is not anchored to the body. Affecting only one in one million births, it is known as “the worst disease you’ve never heard of.” RDEB has no cure and requires constant attention, because the slightest touch or friction causes the skin to blister and come off.
“Catching the blisters when they start is essential to lessen skin loss,” said Lilah’s mom, Kelsey. “A needle is used to lance every blister to prevent it from growing.”
Bandage changes can take two hours of Lilah’s day, and the materials cost more than $600 a day.
Despite her terrible disease, Lilah’s spirit radiates a joy that drives out despair. Kelsey said that Lilah is a 9-month-old teacher to everyone she meets.
“Lilah is a beacon of in-your-face truth,” Kelsey said. “Even with the worst of wounds, she will look up and laugh in your face. It is just amazing. It’s one thing to see an adult in pain being able to vocalize it and show it. But it’s another thing to see a baby not even react to something that would completely debilitate most adults.”
CICOA supports Lilah and Kelsey with a care manager who monitors the needs and progress of the family and adjusts the care plan as needs change. Kelsey also receives 60 hours of respite nursing a month so she can spend time with her healthy six-year-old son.
“Lilah has taught me to be unselfish and how to be grateful…that headaches and small pains don’t matter. She has taught me to have faith,” Kelsey explained.
Keep up with Lilah’s story on her Love for Lilah-Butterfly Facebook Page.