INDIANAPOLIS — A young Hoosier suffering from a rare disease is getting a new set of wheels to help her get around.
Her name is Lilah, and she suffers from epidermolysis bullosa, also known as EB. The illness means she lacks a protein called collagen VII. It’s the glue that keeps your skin, tissues, and membranes attached to your body.
“Any heat, friction, or trauma causes the skin to slough, blister, or fill with fluid,” explains her mother, Kelsey Townsend-Miller. “If she falls, the skin slips off. If she bumps, it will blister, and fill with fluid until I pop it. We will lose large amounts of skin if we don’t get to it quickly enough.”
Doctors didn’t think she would make it past a year, but she is now 5 years old. Her mother says there is no cure, but advancements in treatments now have some people living with it until their twenties.
Unfortunately, the illness also impacts the skin and tissues in her organs. While they can see blisters on the skin easily, it can be extremely difficult to catch issues happening internally until something happens. She can also tear the skin on her eye simply by blinking too fast, or in a way the skin doesn’t like.
She can not swallow food either, and has to have routine surgeries to open her esophagus even though she does not eat with it. That doesn’t stop Lilah from enjoying her favorite foods, however. She will chew on food for a long time just to see how it tastes before spitting it out later.
Thanks to Anna’s Celebration of Life (ACOLF) she is getting a free, motorized wheel chair to help her get around when her feet become too blistered to walk. ACOLF has been providing life-changing gifts to Indiana children with special needs for 15 years.
“The chair is going to make it so no matter what we have planned, we don’t have to change the plan. She’s always found ways to adapt, and never stops moving. This is a last resort in times where she needs it. I want her to use her muscles,” her mother said.
“She’s a happy girl. I very rarely hear her complain, if she’s complaining she’s in bad shape. If she can do this, doesn’t matter what you’re going through, you can do anything. She’s a happy kid, and kids gravitate to that, they want to be her friend, want to play with her. Some days when she can’t go outside to recess, they will let a friend stay inside with her, and they all volunteer.”
Lilah has two more tests coming up this month where doctors will see how she is doing internally. Her family hopes to give her new chair a test drive shortly.