Lakelynns Journey with RCDP1

Given the permission of Cierra and Tyler I am sharing in hopes to provide some relief to their financial burden and/or allow their community of loved ones and friends to rally around them.

On 12/12/24 Cierra and Tyler welcomed their baby girl Lakelynn Brooks Rager into the world. Like all expecting parents they were hopeful to bring a healthy child into the world. While there were concerns for Lakelynns health, Cierra and Tyler remained optimistic that against all odds and doctor’s suspicions, Lakelynn would prove them wrong.

It wasn’t until weeks later genetics testing confirmed their worst nightmare— Rhizomelic chondrodysplasia punctata type 1 (RCDP1). You can read more about RCDP here: https://www.ncbi.nlm.nih.gov/books/NBK1270/ this condition varies in stages. However, Lakelynn being type one is the most severe form. In short, Lakelynn has been given a terminal diagnosis and while there are many unknowns, the road ahead will bring heartache and trial.

Currently, Lakelynn remains in the neonatal ICU at the University of Iowa Children’s hospital with no known discharge date. Due to complications from her diagnosis she is currently awaiting surgery for g-tube placement once her body is strong enough. Along with cataract surgery to hopefully restore some of her vision. Tyler has continued to work and commute to and from Iowa city and Cierra is expected to return to work in the short weeks ahead.

Given Lakelynns prolonged NICU stay, Cierra’s return to work is not justifiable at this time and while the hospital has been working closely to provide resources for assistance, the outcome has been limited. Cierra has also been commuting home to Altoona to care for her other two children Brantley (7) and Aubrey (4).

Our Hope with this go fund me would be to provide Cierra the ability to be present with Lakelynn and ease some of the financial burden of being out of work. This would also provide support in food, lodging and travel fees, until they are able to bring Lakelynn home.

Once Lakelynn is able to come home, she will require around the clock care. We are hopeful at that time, she will qualify for home-health care. However, these things can take a lengthy amount of time for approval. Cierra will be home to manage all of her cares, commuting to Iowa city to meet with specialists while also still supporting her other two children.

I appreciate each of you that took the time to read this update. Cierra, Tyler & their families appreciate whatever form of help you’re able to offer. A donation, a prayer or even sharing their story.