It was in April of 2016 when our world came to a quick halt. Our two youngest daughters Mollie and Madelyn were diagnosed with Juvenile Sandhoff Disease, an ultra-rare neurodegenerative disease that is fatal in children. Pictures and videos remind us of how both girls were developing normally both in dance, soccer, and playing with friends until we noticed regression happening in their everyday lives. As with all children with this disease, the continued damage to the nerve cells has caused a loss in cognitive ability, loss of speech, and other health related issues.

It is heartbreaking to share that Madelyn passed away at the age of 14 on December 18, 2024 due to complications of the disease. Her sweet spirit and legacy will carry on in all of our hearts.

Through the efforts of NTSAD and groups across the nation like our local community, financial support has been raised to advance the research. Other than their daily care, our primary focus is to help ensure the next generation of research can begin to which a cure can be found, and go beyond a treatment to minimize or stop further damage once it is done.

To that end, we would like to thank everyone who continues to support us during our Miracles for Mollie and Madelyn . Please visit Miracles for Mollie and Madelyn Facebook page for more information.

While those gifted in the medical field work out a solution, we ask first and foremost for continued prayer. We, as a family, are holding on to God’s Word and this following scripture specifically:

Rejoice in the Lord always; again I will say rejoice! Let your gentle spirit be known to all men. The Lord is near. Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all comprehension, will guard your hearts and your minds in Christ Jesus. Philippians 4:4-7

Under God’s Grace,

Jeff and Mandy Ronaldson and Aaron, Emma, Mollie, *Madelyn*