Wednesday, February 17, 2010

Jonah's EB Auction

Raising Funds to Find a Cure

Many of you have heard of Jonah. I feel as though I know Jonah too. I have followed his story and prayed for him and his parents as they struggle with his disease called Junctional Epidermolysis Bullosa. He faces a life of painful blisters, hair, nail, and major teeth issues, as well as the possibility of respiratory involvement. Jonah stays bandaged from the neck down. I am giving thanks today for Jonah and his awesome parents, Patrice and Matt. Jonah will celebrate his first birthday on February 27th. I painted this watercolor print and mailed it off this weekend! I am excited to hear when it arrives!

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. If you have followed my blog, you may have read about Jonah and about baby Leah and Tripp. I have read some of the stories, but the stories always bring me back to Jonah, and I share his story, his struggles, and the struggles of his family. The auction carries Jonah's name, but it is for all of those that are fighting EB and in honor of those that have lost that fight.

Today, I'd like you to meet Caroline. The following was written by her parents, Adrienne & Pete Provost of Palatine, IL.

" 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."

Caroline, now 4 years old, makes Jonah's parents optimistic and excited for Jonah's future! Please, check out the auction and remember to thank God for your children!


Patrice said...

Oh Carol, I LOVE the painting. Thank you so, so much. I can't wait to hang it in his room. You are so kind to our family. Thanks for thinking of Jonah and keeping us all in your prayers. Hope we get to meet someday. Thanks again! :)

Karen said...

Thank you for sharing about the auction. I went over and looked at some of the items.
And thank you for reminding everyone to pray for these precious families and bringing an awareness to this.

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