It’s easy to forget about those who live among us who are suffering everyday of their lives. Most times, generally speaking, we aren’t aware of those people who live a constant battle. And if we do become aware, it transports us to a place of uncomfortable reality. Perception quickly becoming sorrow, throwing us into a swirling place of emotion where our once naivete resides. Knowing makes us face the pain so many cannot escape from. It’s a good thing actually. It keeps us grounded to others and forces humanity out from underneath all the posterous day-to-day.
The following story will be an introduction to this pain. But before you turn your attention or choose to read further, it’s important to note there is a very good reason this story is being told. I’m hoping the following words will allow help to come to someone who sits in her bed waiting for it. Praying for it. To allow love and caring to come to a frail angel who doesn’t see much of it.
I recently had the pleasure of interviewing a young lady who I found to be timid as a lamb, but as fierce as a lion. In her 22 years she has spent on this earth Lindsey Evans has experienced what most of us haven’t in a lifetime. She doesn’t complain about it. In fact she chalks it up to normal. Her normal to be exact. It’s normal for her to feel pain every minute of every day. It’s normal for her to struggle to do the simplest of tasks such as take a bath, use a pencil or walk across the floor. This is the way it has always been for her. Being wrapped from neck to toes 24-hours a day. Tending to her many “boo boos” as she calls them.
Lindsey was born with a condition very few people have heard of. They call it “The Worst Disease You’ve Never Heard Of.” Epidermolysis Bullosa (EB) is a rare genetic connective tissue disorder that affects 1 out of every 20,000 births in the United States (approximately 200 children a year are born with it). There is no treatment or cure. There are many genetic and symptomatic variations of EB, but all share the prominent symptom of extremely fragile skin that blisters and tears from minor friction or trauma. Internal organs and bodily systems can also be seriously affected by the disease. EB is always painful, often pervasive and debilitating, and is in some cases lethal before the age of 30. EB affects both genders and every racial and ethnic background equally. Daily wound care, pain management, and protective bandaging are the only options available for people with EB.
Lindsey’s mom Linda is her caregiver. She stays home and takes care of her daughter in their small one bedroom apartment in Russellville. A Christmas tree shines from the living room as Lindsey’s dog Sophie watches over her.
“I’m her mamma,” smiles a shy Lindsey about Sophie, both wrapped like a butterfly in a cocoon. “She’s my baby.”
Lindsey received her education by way of a teacher coming to her house. She says she didn’t get to go to school like the other kids, with a frown on her face. She hasn’t had the opportunity to make friends. Her mom, she says, is really her only one. She was spared the cruelty this world can inflict upon the weaker. But she suffers with the loneliness that comes from it.
Lindsey has learned quite a lot of lessons, however. You can see this by viewing her Facebook cover photo that reads, “The broken will always be able to love harder than most. Once you’ve been in the dark you learn to appreciate everything that shines.”
Linda says of her life with Lindsey, “It’s hard watching your child suffer and there is nothing you can do about it. She’s the most precious child, so loving,” said her mom with tears streaming down her cheeks.
When Lindsey was born, Linda said she noticed a few places on her. There was a place on her knee and one on her elbow. A few months later Lindsey was in a hospital in North Carolina when they received the news.
“They have told us there is nothing that can be done,” said Linda. “There is no cure and little is known about it.”
Lindsey and her mom travel once a year to the Cincinnati Children’s Hospital to be poked and prodded only to be sent home with nothing new.
“We know it’s a missing gene that affects her skin,” said Linda. “We know they are still studying it.”
Lindsey spends a lot of her time on the internet. She loves to follow YouTube Bloggers and socializes on Facebook. There is a site she spends time on filled with others just like her. Recently she had the opportunity to change a younger girl’s life who surfers with the same condition.
“We met Lindsey through Facebook,” said Alissa Dodson of Clarksville, Tenn. Dodson’s eight-year-old daughter Raegan has EB as well. “We were searching for someone who had EB in our area and found Lindsey.”
Dodson quickly communicated with Lindsey and before long set up a meet-and-greet at McDonald’s in Russellville for the two to get acquainted.
“It was amazing,” said Dodson. “She (Raegan) was so happy because she has never met someone else with the same condition. She is so self-conscious and people can be so mean. When she met her (Lindsey) she colored with her and wanted to know when she could see her again. She now knows she is not the only one. It has brought her confidence level up. Lindsey and her mom are always checking on Raegan and she about them. EB is a horrible condition. It’s a struggle for these girls to go through life, and the fact they are more worried about each other is amazing.”
When asked what Lindsey would change she says not surprisingly “the pain.” She suffers from back pain as well and wishes she had a better bed. She and her mom sleep together in a queen sized bed that doesn’t allow for much movement.
This is where the help comes in.
When Dodson heard of Lindsey’s sleeping arrangements she realized a bed that could move up and down would allow her the comfort she needed to sleep at night.
“I spoke with a gentleman from Mattress by Appointment in Clarksville who said he would give us a great deal on a bed for Lindsey. He even donated the first $100,” said Dodson. “My daughter wakes up at night screaming in pain so I understand.”
Dodson opened a Go Fund Me account for the purchase of a bed for Lindsey. You can access the link at http://www.gofundme.com/love-for-lindsey-2w6e43re
Dodson will be facilitating the funds collected and will order the bed as soon as possible.
To contact Chris Cooper, email [email protected] or call 270-726-8394.