Reaching out for help for my granddaughter.

Lorelei Joan, was born premature on June 20th in her home town Casper, Wyoming. Initially, we thought we were just dealing with standard premature lung issues, but she needed extra help to breathe. An echocardiogram showed concerning blood flows in her heart.

To figure out what was going on, the doctors ordered a chest CT and genetic testing and the results completely flipped our world upside down. Lorelei was diagnosed with an extremely rare mutation in her FOXF1 gene, which causes a severe lung disease called Alveolar Capillary Dysplasia (ACD) along with severe pulmonary hypertension. Basically, the tiny blood vessels in her lungs didn’t form right while she was growing. Because the blood has a hard time passing through her lungs, the right side of her heart has had to work under extreme pressure just to push blood through.

In just a month, Lorelei’s young life has been a whirlwind of heavy medical support and continuous high-level treatments just to keep the tight blood vessels in her lungs open. With this disease, her only option for a future is a pediatric lung transplant.

Her journey has already taken her across three states: Wyoming, Colorado, and now Missouri.

Right now, the family is totally split up. Taylor is on the ground in St. Louis living by Lorelei’s bedside in the NICU and working with her new medical team. Nick is back home in Casper temporarily with their two young boys, working around the clock with their Grandmother from Virginia to keep some normalcy.

Lorelei just completed her transplant evaluation in St. Louis right now and is awaiting insurance approval to be placed on the list for a new pair of lungs. Once on the transplant list, the family is looking at a really long, intense road. Between the wait time after being placed on the list, which could range from 2 weeks to 9 months, the surgery, and her recovery, the family will need to relocate to ST. Louis for the next 6 to 24 months or more.

Currently the plan is for Nick, the boys and their grandmother to visit Taylor and Lorelei in St. Louis by the end of this week so they can finally be together.

Any prayers and/or donations would be greatly appreciated during this rough time the family is working through. Donations would be used to help with medical bills, relocation, and any other unexpected costs that are needed in order to give Lorelei her best chance.