American Girl Dolls

Our village is quite sneaky and amazing. On Easter, all of our girls received the most beautiful American Girl Dolls from anonymous friends. Cecilia and Lilly’s dolls each had a cane as well. They were so excited and jon and I were in shock and overwhelmed, once again with the generosity of so many people. If you were in on this, THANK YOU!!!

Test Results are in...

Praise God! We are so relieved, hopeful, and breathing again. Thank you for your constant support and prayers. Test results are in... 🙏🏻Lilly is affected, just as we suspected. 🙏🏻Nora is totally unaffected. 🙏🏻Ruthie is a carrier and will not be affected by Batten disease. 🙏🏻Zelie is a carrier and will not be affected by Batten disease. {I have so many things to tell you all, about American Girl Dolls and Moving to our new home, but I needed to get this posted first.}

Party all night! EEG & MRI All Day

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 baseline for each of them as their disease progresses. The EEG checks for seizure activity, and seizures are more prone to happen with sleep deprivation, hyperventilation, and visual stimulation. They had to be sleep deprived for their EEG test, which meant that they had to stay up till midnight the night before and then had to be woken up at 4AM. Jon took the first round. They went to a movie, then to Dave and Busters to get all the tickets, and then bowling, and finally to McDonalds for ice-cream. I woke them up at 4 and we went to Starbucks for hot cho

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© 2020 by Rare Sisters Batten Foundation

a 501c3 Non Profit Organization Tax ID 84-44-06415

PO BOX 746561

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