Charlotte and Sophie have been diagnosed with a rare terminal illness called Batten Disease. There are different levels of Battens, and Charlotte and Sophie both have the most rare form, CLN1. Only a few hundred people worldwide have been diagnosed with this sickness. Symptoms of CLN1 include early regression in motor skills and cognitive development. Their brains are shrinking, dying, and basically shutting down their bodies; the doctors have given them both around five years to live, and unfortunately there is no earthly cure for Batten Disease.
Charlotte first showed signs of regression around 12 months old; milestones such as walking, talking, grabbing, and eating started becoming difficult for her. Over the course of one year she has already lost all of these skills. She has frequent muscles tremors and twitches that create restlessness in her — especially at night. Blindness and seizures have started in her life, and tube feeding will eventually take place in her future.
Sophie has some similar symptoms, but she was also diagnosed with a movement disorder which causes pain in her muscles. Her regression started much earlier–around six months. She also has epilepsy and neurological pain. She is on several medications for these conditions in hopes of improving her quality of life.
Both girls can no longer walk, talk, sit up, hold up her head, or hold objects; Charlotte has lost all ability to roll over and she can only raise her arms or move her legs from side to side.
Inserted is a link with more information on CLN1: https://rarediseases.org/rare-diseases/santavuori-disease/
While this outcome seems devastating, we take comfort knowing we serve a big God who can do the impossible. We pray in faith for their earthly healing, but we know that God has already granted their heavenly healing. We choose to focus on the eternal matters rather than the earthly trials. We feel humbled that God has entrusted us to care for these two little girls. We truly believe God has allowed this circumstance into our lives to spiritually grow us and to share with others how good God is. We pray that He alone receives the glory through this trial and that other lives can be changed or encouraged to grow closer to Him.