“Everlee has one of the rarest of genetic disorders. Periventricular nodular heterotopia. It’s unheard of by many people, including healthcare professionals. It causes a widespread amount of complications over her entire body due to migration of cells and the deficiency of certain genes and DNA. She has a hole in her heart, that she awaits closure for in the next several weeks. She is on a feeding tube because of her extreme failure to thrive, she takes nothing by mouth and has global developmental delay so she will follow with therapy for the next several years to come atleast. They are evaluating her for cerebral palsy, she is a palliative care patient for neuromuscular pain. She has hernias, and a rectal malformation, a heart murmur, and she is oxygen dependent for chronic respiratory failure. She has over 18 different specialists, and she has spent more than 40 days in the hospital in her 6 months of life. She hasn’t gone a single week without atleast 1 doctors appointment since she’s been born.

Her current hospital stay has been for yet another infection- this time it’s paraflu that resulted in her stomach lining becoming thinned too much from steroids and she developed gastric bleeding that turned fatal quickly. She is currently stable in the picu but being monitored closely for observation on a blood transfusion. It’s been a rough road for her, and for our whole family, her big sister included. It’s been hard being away from her, so we try to go see her and spend time with her when we can, which is hard financially due to travel. Buying 3 meals a day, every day for 2 people has also added to that stress. Everlee is the light of our life, and the strongest person I know. She is the greatest inspiration to anyone.” -Everlee’s momma, Carlee

This isn’t my story. This isn’t my journey, but as a fellow parent I can’t begin to imagine. I know that bad news seems to be more frequent than good so it’s easy to become numb to the harsh pain going on around us. It’s so easy to keep scrolling and push sadness away.

Just stop for a moment. If you you can’t donate, just put yourself in Ben and Carlee’s shoes, and pray.

If you can donate, please do. If a little hope, a little grace, a little support, can remove even the smallest bit of pain, it’s worth these efforts.

Pray for Everlee, and her family as they deal with this up hill climb.