We are excited to announce that RARE SISTERS shirts are now available for Pre-Orders. The shirts will not be ready for delivery until...

On Monday, the girls had their annual visit to Dr. Matthias, the retinal specialist. The girls are such troopers through these...

One more FAQ that we get often is "It's genetic?" Yes. Batten disease is genetic. In this case, it is known as autosomal recessive,...

I recently went LIVE on the Rare Sisters FaceBook Page to answer some FAQ's that we get. Here it is in the written form. How are the...

Lilly, Lillian Jeanne, has a birthday on Sunday. She will be seven this year. Lilly is a wonderful sister, and friend. She loves...

It has been one month since we moved to our new home. Already, it has been such a blessing. When we got diagnoses, we knew that we...

Our village is quite sneaky and amazing. On Easter, all of our girls received the most beautiful American Girl Dolls from anonymous...

Praise God! We are so relieved, hopeful, and breathing again. Thank you for your constant support and prayers. Test results are in... ...

Last Thursday, Cecilia and Lilly had their first EEG and MRI. The good news is that their results were normal, and now we have a good...

Both Cecilia and Lilly started Cane Lessons in January. We have been so fortunate to have a wonderful TVI (teacher of the visually...