Remember when you were a kid and you hurt yourself? Maybe you tripped and scratched your hands, or your knees, and for the next hour all you could think about was the throbbing pain? It felt like your skin had a heartbeat. It felt like it would never get better. But after an hour or so, you would get distracted and the pain would lessen until you completely forgot it was there in the first place, and your life would go on.
Forgetting about the pain is not an option to Cattaleya.
After an uncomplicated and healthy pregnancy, Cattaleya was born on October 15, 2014. The day her parents, Linda and Hector, had been waiting for their whole lives, was here. They were over the moon with joy.
But the NICU team rushed Catt away immediately. The feeling that something might be wrong with her little girl hung in the air like a question, but it was a question that Linda didn’t want to know the answer to. As they bundled up her baby and ran past her, Linda got a fleeting glance at her daughter. To her, she was perfect. Then she caught her husband’s gaze, and his expression “told her another story.”
Cattaleya was missing skin all over her body. Initially, the hospital staff thought this must be because she was premature. But when they used adhesives to tape tubes to the baby and what skin she did have came off when they pulled… they knew it was something far more serious.
Catt was diagnosed with Recessive Dystrophic Epidermolysis Bullosa. The diagnosis was not immediate because the doctors had only seen a case similar to this one other time. EB is so rare it’s been nicknamed the “worst disease you’ve never heard of.”
After 11 days in the NICU, Linda and Hector were sent home with strict instructions to care for their newborn. But the care was intense and being at home was “a different animal.” Changing Catt’s bandages and cleaning her wounds is a daily process that usually takes between 2 and 3 hours. Right now, Linda and Hector have to do this on their bed. It’s not ideal, because the space should be sterile, but they don’t have any other options. They give her a bath in the bathtub, but to lay her down means to put pressure on her underarms and sides. Linda tells us, “Every day we injure her, but we have no other place to bathe her.”
Catt’s condition is for life, so her family’s focus is on giving her the best quality of life, every day. But they couldn’t afford the customized equipment that would ease their daughter’s pain. They felt hopeless.
Then one day while Linda was on an online chat for families with EB, someone mentioned Chive Charities. They said they helped another little boy with EB named Reid, and the grant items changed his life. Linda thought to herself, “Is it possible this community would care enough about my daughter to change her life too?”
The answer is yes. There is a community that cares about changing the lives of people they’ve never met. They are the Chive Fund donors.
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