Miracles for Mollie and Madelyn
Last Updated: Wednesday, 11 August 2021 12:49
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
Last Updated: Tuesday, 14 January 2020 11:43
December 31, 2012 - May 16, 2015
Danny Ambrose Kenny was born December 31, 2012 in North Wales, PA. He was the sweetest baby and his smile was captivating.
After many doctor visits and months of questions, Danny was finally diagnosed with Classic Infantile Tay-Sachs.
We promised to make every day of Danny’s life as amazing as we could.
We would take him to Sesame Place, parks, the zoo, pumpkin patches, the beach, and many other places we enjoyed. We wanted him to experience as much as he could. He loved music, massages, various flavors of chap stick, and listening to his brother comfort him. Danny’s message was and remains to this day – Love. Love is all he knew. He taught us more about life and love then we could ever imagine. He taught us to live in the moment, and not to take anything for granted. Danny surrounded us with love. Whether it was family, friends, or people he never met, Danny somehow touched and made everyone better. He was and still is an inspiration.
In his memory, we often display random acts of kindness to continue this legacy of love. Danny truly made a difference in this world, and continues to do so. Anyone who was ever lucky enough to hold him in their arms, to embrace him, will tell you that to do so was the most enjoyable and most amazing feeling in the world. Love would radiate from him. An immediate feeling of peace would overcome them. We hope and believe that one day there will be a cure. Please feel the love, and honor Danny’s memory today by contributing to our fund.
Your contribution in Danny’s memory will help fund NTSAD's Family Support and will directly benefit new families who are faced with a Tay-Sachs, Sandhoff, GM1 or Canavan diagnosis. WE BELIEVE that helping others when they need it the most is one of the greatest acts of kindness one can perform.
Your contribution will forever help to keep Danny’s legacy of love alive and we are forever grateful to you for this.
Gifts in honor of Danny will benefit NTSAD's Family Support Services.
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