Edith Rose Smith was born September 21st 2024 at 22 weeks in the pregnancy. she was due January 25th 2025. She was one pound and 10.5 inches long. She has had many complications since birth, intestines ruptured, shunt placed, several surgeries in that, still has a breathing tube and would require a tracheotomy. The sad news recently discovered is she developed a very rare disease that mutated on her own. Due to this rare condition, her brain stem is deteriorating. We don’t know how long baby Edith has on this earth but we’re thankful for the time we have. She is now 8 months as of 5/21 and 13 lb. She is stable for now but her body will eventually shut down. Her little body has endured so much! We will be planning a celebration of life but we’re not sure when. Donations will be used for hospital visits as we travel hours to and from the hospital. This will also help us with bills and to cover her celebration. Thank you kindly for reading and praying for her as we navigate this next step. We appreciate all those who are generous enough to help us in this time !

God Bless.

HUGE UPDATE!!!! We are no longer planning a celebration of life as we will be celebrating her LIFE! She’s turning ONE year old, and SHES GETTING THE TRACH!!!!

As we were told so many times she wouldn’t make it, we were also declined by several hospitals for transfers. The hospital had not recommended the trach due to her medical needs, but she has grown out of those and is now recommended the trach! Which is a breathing tube in the throat. A pathway to home! As before there was only planning for her passing, waiting: NO more of that! Now we wait for this surgery and the long road we have ahead! 24/7 required care for this sweet girl who defied ALL ODDs her percentage of living was 0%

EDITH COULD BE COMING HOME

Thank you everyone SO SO much!!!!