Every day, every parent wakes up with gratitude in their hearts for healthy children. For those who don't have that luxury, those parents are grateful for families like the Fries family. Beth and Jon Fries know what it's like to wake up to children who are battling a life threatening disease every day. They know all too well the overwhelming stress and the heart break of caregiving.
Meet the RARE Sisters: Cecilia, the oldest of the sisters, is a lively and energetic girl who enjoys being active and spending time outdoors. She has a kind and generous nature. Unfortunately, she is affected by Batten Disease, with her vision already significantly deteriorating and continuing to worsen quickly. Additionally, she faces challenges in school and with her speech. Lilly is the second of the five sisters, known for her sweet and calm demeanor. She enjoys the simple joys in life and has a love for dancing. Like her sister, she is affected by Batten Disease, with her vision beginning to decline. She has also been diagnosed with epilepsy as a result of her Absence Seizures. Nora, Ruthie, and Zelie are the younger sisters, full of energy and spirit. Nora is unaffected by Batten Disease, while Ruthie and Zelie are carriers. Their lives will be deeply influenced by their older sisters' diagnoses, and they will walk side by side with their sisters through their journey with Batten Disease.
On January 3rd, 2018, Cecilia and Lilly Fries were diagnosed with CLN3 Batten Disease, a neurodegenerative disorder. They have lost their vision, experience dementia, suffer from seizures, and are facing cognitive decline along with behavioral challenges. In a few years, both are expected to endure untreatable seizures, loss of mobility, worsening dementia symptoms, and more. Unfortunately, there are no available treatments or cures for Juvenile Batten disease, and the life expectancy ranges from the late teens to early twenties. Palliative care is the only option currently available.
The Rare Sisters Batten Foundation was inspired by the overwhelming support the Fries family received from their community. Deeply moved by the generosity of people both near and far who were affected by the diagnosis, the Fries family decided to establish a foundation to further support medical research and provide meaningful assistance to other Batten families facing the unimaginable challenges that come with the diagnosis. These challenges are often financially burdensome, yet essential for the care of their affected children. "The Rare Sisters Batten Foundation aims to help further the development of medical research for treatments and cures for CLN3 Batten Disease, and provide monetary assistance to families with children diagnosed with Batten Disease. Financial assistance for families can be given for any needs the family encounters due to Batten Disease; no request is too big or too small. " Beth and Jon Fries have truly been a blessing in the lives of so many other families. It is amazing and inspiring to watch a family give to others, seek to help others, fill their lives with service to others, all while battling their own grief, their own struggles, and their own heart break.
If you would like to learn more at the RARE Sisters Batten Foundation or donate to this incredible organization, please visit www.raresisters.org
Donating to the Rare Sisters Batten Foundation will help further medical research for treatments and cures for CLN3 Batten Disease, and provide monetary assistance to families with children diagnosed with Batten Disease.