If you are here, chances are pretty good that you know Jonah's story. Maybe you have just recently discovered this awesome little boy or maybe you have followed his journey from the day he was born. Either way, you're here because his story (or one like his) has touched you. If you've been following Patrice's blog for awhile, you may know the stories of Leah, Tripp, Sam and others. Or, maybe you never clicked the links and read their stories. Either way, even though many of you are here because of Jonah, there are many, many more individuals that share his story, his struggles, and the struggles of his family. Despite the fact that the auction bears Jonah's name, we are doing this for all of those that are fighting EB and in honor of those that have lost that fight. EB is a crappy (and that is purely an edit for political correctness... it's worse than crappy) condition that no one deserves.
Today, I'd like you to meet Caroline. She's just one of the little fighters that we are doing this for. Here is her story as shared by her parents.
Caroline was born on August 22, 2005, following sister, Elizabeth (then 4), and brother, Patrick (then 2). The neonatologist attending her c-section delivery immediately identified that Caroline was suffering from a skin disorder – her left leg was completely denuded from the knee down and she had other areas of missing skin, including where the umbilical cord had been wrapped around her neck several times. Within a few hours of her birth, Caroline was preliminarily diagnosed with EB by a pediatric dermatologist and transported to Children Memorial Hospital’s Pediatric ICU via ambulance.
She was to remain in the PICU for 133 days. During that time, biopsies led to a diagnosis of Junctional non-Herlitz EB – a sub-type with a relatively good long-term prognosis. She received Apligrafts (skin product grafts) on her legs, which were highly successful in serving as biologic dressings and promoting the growth of her own skin in the denuded areas. She was unable to eat orally and underwent g-tube surgery at 5 weeks. She suffered numerous infections. She endured 14 different PIC lines for IV nutrition and meds – each time the skin giving way where the line was inserted. When her increasing respiratory distress was eventually linked to GERD (reflux), her G-tube was converted to a G-J, moving food to the small intestines rather than the stomach. Fortunately, her esophagus was able to heal enough to avoid a tracheotomy. She could not tolerate wearing diapers or clothes, instead swaddled loosely in soft blankets.
I would visit 3 days during the week (my typical work schedule) when we had child care for Elizabeth and Patrick, navigating a 1 ½ hour commute each way. On weekends, Pete and I would visit together as much as possible; but each visit together required finding child care for our other two children, who were not allowed on the PICU and did not fully understand the situation. Caroline remained in the hospital from the dog days of summer, through fall, Halloween, Thanksgiving, Christmas and New Year’s. The holidays were especially painful as we made the difficult decision to spend them with our families rather than at the hospital – attempting to maintain some normalcy for Elizabeth and Patrick. Finally, on January 4, 2006, Caroline came home - along with liquid oxygen tanks, suction and nebulizer equipment, 24/7 feeding pump and 14 different medications! She had severe developmental delays due to limited movement from her hospital bed and began physical, occupational, developmental, and speech therapies.
It’s now 4 years later…
...and Caroline is a smart, tough, amazing little girl. With piercing blue eyes and a spirit pure and sweet, she has inspired the kindness of family, friends, and strangers, and touches all who meet her. She has accomplished many things we weren’t sure would ever be possible: she attends preschool, she rides a tricycle, she eats taco chips… She endures her physical challenges with courage and is quick to give hugs. Elizabeth and Patrick occasionally express frustration with EB, the care it requires, and the limitations it imposes on our family. They are gentle with and protective of Caroline, showing her love and companionship and teaching her in many ways.
We thank God for the blessing of each of our children. We pray for strength, patience, and a cure for EB.
Adrienne & Pete Provost, Palatine, IL
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