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Lilly is turning 7!

Lilly, Lillian Jeanne, has a birthday on Sunday. She will be seven this year. Lilly is a wonderful sister, and friend. She loves unicorns, baby dolls, and Frozen. This sweet girl also has Batten disease. Each birthday is bittersweet at this point. We celebrate her life here on earth for the last seven years, but we know that her birthdays are limited. In honor of her birthday, our challenge is that for everyone reading this donates $7 in honor of Lilly’s 7th birthday to the Beyond Batten Disease Foundation through Rare Sisters. The BBDF is a primary catalyst for research in finding treatments and cures for CLN3 Batten Disease.

New Home

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 would have to move. Our last home was not going to be conducive to our batten girls, and the many needs that they would have. We needed a ranch style home with all the bedrooms on one level. On a Sunday about 10 days after diagnoses, I drew up a floor plan of what I thought would work for our family. I’ll modest four-bedroom ranch, knowing full well that we would have to build, because they don’t make four-bedroom ranch houses. That same week on Thursday, I thought what if I reach out to Builders in the area to see if they would change one of their floor plan

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© 2020 by Rare Sisters Batten Foundation

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

PO BOX 746561

Arvada CO 80006

foundation@raresisters.org

303-842-2680

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