Harper Lydia.. Our Warrior, our Angel

Harper was born with Cystic Fibrosis, a chronic disease that affects the digestive and respiratory systems. Cystic fibrosis affects the cells that produce mucus, sweat, and digestive juices. It causes these fluids to become thick and sticky. They then plug up tubes, ducts, and passageways.

At 1 week old she had to have an ileostomy, a surgery that disconnects the intestines and creates a loop of intestine on the outside of your body for waste to secrete into a bag, because she couldn’t pass her meconium. This is a rare complication that happens with CF babies and is caused by a thickening of the meconium in the intestines.

Harper spent 3 weeks in the NICU at the start of her life and is currently back in the hospital where she is being treated for low weight gain and jaundice.

This little warrior is tough as nails and such a trooper but will face uphill battles with her health her entire life, as there is currently no cure for CF.

We are setting this GoFund me up for Harpers Family (Tim, Sarah and Maddon). They would never ask for help but we know now more than ever life and medical expenses are and will continue to pile on them. If we can in anyway ease any additional stress so they can fully concentrate on their little warrior, we want to. We want them to not think twice about whether they need to choose between going into work or being at the hospital with their baby. Please share this to any and all friends, family and employers. Anyone you know wanting to support a CF family.

so much Love to All

Auntie Annie

Uncle Kyle

Uncle Adam

Update:

Harper is on her third inpatient stay (not including the NICU). Her GI issues have been complicated, we have learned, by a second diagnosis- Alpha1 antitrypsin deficiency disorder. This is a double hit on her liver and could potentially require a liver transplant in the not too distant future.

Thankfully she has been transferred to Children’s Hospital Los Angeles and is getting the best care there and continues to gain weight little by little.

Medical challenges aside, she is starting to smile and coo at her Daddy and Mama and loves when her little brother comes to visit her and shows her his Dinos.