Ourjourneyforjackie

Patient Leader

Hi, I’m Kim. I am a mom to two amazing children. A wife. A caregiver by nature and by profession as a registered nurse (now staying home). Our journey for Jackie began in the summer of 2015 when we learned at a 20 week ultrasound that our unborn baby would be born with a cleft lip and heart defect. Our world was never the same after that day. Though the pregnancy was incredibly challenging and scary, true fight began after she was born. Shortly after birth we were told she may be blind. She may be deaf. She was unable to breastfeed, unable to drink from a normal bottle and required an NG tube followed by a surgically placed feeding tube at 3 weeks old. She had a cleft palates in addition to cleft lip and hip dysplasia that would require surgical intervention. The hits kept coming. Genetics clinically diagnosed her with CHARGE, a rare and incredibly complex syndrome. We took her home at 6 weeks of age, with a feeding pump, supplies, lists of appointments, follow ups, therapy suggestions and a surgical calendar for the next round of surgeries. It was terrifying. I initially started the page ourjourneyforjackie on Instagram as a way to quickly get information out to our family and friends, but it has grown to so much more. The page has allowed me to connect with other moms and children/adults who have CHARGE or other rare diseases. It has allowed me share our story; getting our story out there has been so therapeutic for me. It has allowed me to help others, and has given me support and love from all over the world on not only the good days, but also the bad. Special needs parenting is no easy task, finding a community that can support one another is crucial. I am grateful for this social media platform, and for this nomination. Truly honored. CHARGE on, Kim

Location

Overland Park, KS

Nominations

Advocating for Another Best in Show: Instagram Best Kept Secret

She has always put her kids firat and done eevrything a mother could do and never loses hope. She makes the best out of scary situations, and continues with her faith and positivity. Truely an inspiration.  — Rachelle

Ourjourneyforjackie

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