For several months now we have noticed that Charlotte is not thriving as a normal toddler would. Some motor skills seemed delayed, new skills she would learn she quickly soon forgot. Over time she stopped walking, talking, playing, and interacting with those around her. Her cognitive and motor development became delayed and started regressing.
We were very worried about her physically declining so rapidly so we took her to a team of specialists and neurologists to run a series of tests.
Charlotte’s results came back and the doctors informed us that she has a very, very rare disease called Batten’s Disease. Only around two hundred people in the world suffer from this. Because of its rarity, there is not much study nor research done, and there is no medicine to cure it.
Typically those who have this disease have a lifespan of 5 to 10 years, but if the symptoms show earlier in life, then the lifespan is decreased to five or less. Charlotte has been given less than five years to live.
Charlotte’s life is in God’s hands and we take comfort in knowing that He controls all things. Charlotte belongs to God and we feel so blessed that He chose us to care for her if only for this short time on earth. Children are an heritage of the Lord and we are so grateful for this little life God entrusted us with.
God has given David and me such overwhelming peace despite receiving this devastating news about our precious little girl. We take joy in believing that He is the ultimate healer and that one day He will heal Charlotte, whether it be earthly or heavenly. The presence of Holy Spirit has surrounded us with calm serenity and granted relief during this burdening trial.
We are eager to see how God will use this trial to teach and to touch the lives around us. We only pray that we will glorify Him through this circumstance. The joy of the Lord is our strength. He is our refuge in which we can hide.
We ask that you will pray for our little Charlotte and that God’s will be done in her life. May He receive all the glory and praise for whatever happens.
God is always only good.