It was in April of 2016 when our world came to a quick halt. Our two youngest daughters Mollie (now 14) and Madelyn (now 11) 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. However, through the efforts of NTSAD and groups across the nation like our local community, financial support has been raised to advance the research for a potential treatment for Sandhoff to the point of human clinical trial. This trial has only just begun in which our youngest daughter may be eligible to participate in. 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 supported us during our Miracles for Mollie and Madelyn Day of Hope events these past few years. We are gearing up for our 5th event for 2021. Our hope is to hold a virtual 5k along with a lemonade/bake sale stand and a couple of major raffle giveaways. Please visit Miracles for Mollie and Madelyn Facebook page for more event information.
While those gifted in the medical field work out a solution, we ask first and foremost for continued prayer in that God would allow the girls to be completely healed. 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
Thank you all for your support and care for our family!
Under God's Grace,
Jeff and Mandy Ronaldson and Aaron, Emma, Mollie, Madelyn