Adelaide, the 3-year-old daughter of Broadway actor Marco Santini and his wife, Laura, has tragically passed away after a prolonged battle with a severe form of epilepsy. Laura shared the heartbreaking news on social media, expressing that their family is now left with “shattered hearts.”
“The machines are off. Her bed is empty. The silence is overwhelming,” she wrote. “Adelaide left us on Saturday, peacefully in my arms and surrounded by love. She is finally free from pain and seizures, but our hearts will forever ache for her.” Adelaide was diagnosed with this rare condition at just 7 months old, and her family has been documenting her journey and treatment on Laura’s blog.
The Santini family has been vocal advocates for epilepsy research, actively raising funds and awareness for the nonprofit organization Citizens United for Research in Epilepsy. They have particularly focused their efforts in Chicago, where Marco has played Alexander Hamilton since 2016.
Adelaide’s Journey
In her blog, Laura described Adelaide’s condition as a rare, neurodegenerative form of epilepsy that led to the gradual deterioration of her brain. Over the past few months, Laura noted that Adelaide had lost the ability to perform simple tasks, like sucking her thumb. Last month, faced with the inevitability of their situation, the family made the decision to enter hospice care, prioritizing Adelaide’s comfort over potential treatments.
“The word that has haunted us since the beginning of this journey has now come true,” Laura shared, reflecting on the painful decline of her daughter’s condition. “We’ve watched as she’s lost her abilities month after month, and now we are faced with this devastating reality.”
A Commitment to Advocacy
In the wake of Adelaide’s passing, Marco took to social media to express gratitude for the immense support the family has received. In a touching blog entry, Laura spoke directly to her daughter, vowing to continue advocating for others facing similar challenges. “I promise you, my precious angel, that your fight and life will not be forgotten,” she wrote. “We will carry forward the lessons you taught us and share your story with anyone willing to listen.”
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Conclusion
In summary, Marco Santini and Laura’s daughter, Adelaide, has passed away after a long struggle with a severe form of epilepsy. The family has been dedicated to raising awareness and funds for epilepsy research while sharing their journey. Laura’s heartfelt messages express both her grief and her commitment to continuing the fight for others affected by similar conditions.