Rare Sisters Batten Foundation

Batten disease is a neurodegenerative disorder. There is no treatment, there is no cure, it is fatal. The Rare Sisters Batten Foundation was created to further help fund medical research and offer financial assistance to help Batten families as their children's care needs increase.

The Rare Sisters, Cecilia and Lilly Fries were diagnosed in early 2018.  The outpouring of support from their community was the inspiration behind the creation of the the Rare Sisters Batten Foundation.  The Fries family was so humbled and overwhelmed with the generosity of those near and far that were touched by the diagnosis that they wanted to create a foundation to further help fund medical research and profoundly help other Batten families that face the unimaginable changes that this diagnosis brings.  Often the changes that come with this diagnosis are financially difficult to overcome, and also necessary to care for their affected children.

The Rare Sisters Batten Foundation has provided grants for families to receive wheel chair accessible vans, elevators, recreational items, wheel chairs, and more.  These things ensure a better quality of life for the affected child and their family.

Testimonials

In October 2020 as the drudgery of Covid-19 wore on I got the call from Beth that Rare Sisters would fully fund my request. I remember thinking as I wrote the grant appeal to Rare Sisters "This is such a big ask. Please Lord let them know how much this means to me." As I write this months later I still have the chills and am in disbelief. What a huge weight lifted! Who am I that the Lord would bless my family so greatly? I don't feel that I can adequately describe the feeling of relief Rare Sisters has given me. This year there have been some very low points in our Batten journey. I admit that I am weary and tired. Sofia has had some dark days with in this last year and there are just no words to convey how difficult it is to watch your child fade away before your very eyes. Blindness, seizures, dementia these are parts of the disease everyone can google. Nobody mentions how it will feel when your child calls out for you even though you are right there but the human you birthed no longer remembers you because dementia has taken over their mind. Or watching your child struggle to have control over their body but their brain can no longer coordinate movements or actions. No matter the struggle she endures, Sofia continues to be be filled with joy. Her smile is infectious. Her love for family, friends, and all that is Disney is ever present. So I must press on as the journey drags on and seems impossible at times. I know that my daughter will live in glory one day. This brings me comfort. I will be forever thankful for my amazing support system. I will be forever grateful to Rare Sisters who came along side this exhausted mama and took a huge burden from me and gave me relief, respite, reprieve. A huge and humble thank you to all who support and pray for our family. God is GOOD!