How One Family Found Security Through a Free Foundation Resource
ADVISORY: Please note: this story discusses estate-planning and medical events.
When Jameson was born in November 2020, his parents’ world changed overnight. What began as ten days in a specialty care nursery quickly turned into a transfer to a children’s hospital for a higher level of care and a life-altering diagnosis of early-onset (neonatal) Marfan syndrome.
“We had no prior knowledge that Jameson would be born with a connective tissue disorder,” said mom Amanda. “The pediatrician noted he had the classic symptoms like long fingers and toes, a dilated aortic root, and floppy lungs. His diagnosis was confirmed by genetic testing when he was a month old.”
Getting this news during the height of the COVID-19 pandemic made an already isolating experience even harder. “We knew no one else who was in our shoes, let alone anyone who even knew what Marfan syndrome was,” she said.
Finding a Lifeline
Jameson’s cardiologist encouraged the family to connect with the Marfan Foundation as a source of science-based information and support. From that moment on, the Foundation became a lifeline, connecting the family with doctors, community members, and nurses through the Foundation’s Help & Resource Center – staff members who answered Amanda’s questions and guided her to resources.
“There is not a word that can adequately describe the positive impact the Foundation has made in my life,” she said. “I no longer feel alone on this journey. The Foundation has empowered me to be the best and loudest advocate for Jameson.”
Through the Foundation, the family discovered local connections in Northern Illinois, attended national and virtual conferences, and found meaningful friendships through online support groups, including one for parents of children with early-onset Marfan syndrome.
“They’re not just a board somewhere,” said Amanda. “They are present and immersed in the community.”
Making the Difficult Manageable
As Jameson’s parents navigated the complex world of care and advocacy, another question weighed heavily—what would happen if they were no longer there to care for him?
“No one can care for Jameson the way that I can,” Amanda said. “It terrifies me that he might have to navigate this world without me. I wanted to make sure there were legal documents directing his future, even without me. FreeWill made this process seem less daunting.”
Through a communication from the Foundation, she learned about FreeWill, a free easy-to-use online service offered to community members for creating legally valid wills. For families touched by Marfan, Loeys-Dietz, VEDS, or related conditions, FreeWill provides a simple way to plan ahead.
“The whole thing surprised me with how easy it was,” Amanda said. “FreeWill had all the bases covered, and I just needed to personalize it. They even sent reminder emails to print and notarize my will. Life is busy, and things get put off, and the reminder was key to making sure my will would be enacted.”
She was also able to create mirrored wills for herself and her husband, ensuring their plans aligned perfectly. “I felt at peace once it was done. I had backups for backups and plans if ABC didn’t happen and XYZ had to happen instead.”
For Amanda, the process of creating a will centered on love, advocacy, and peace of mind. “Anything can happen to anyone at any time,” she said. “Leaving a special-needs child behind with no plan in place is frightening. There was no cost associated with this, which is usually a deterrent. I wouldn’t have a will in place right now if the Foundation didn’t work with FreeWill.”
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Create your free, legal will today and ensure your loved ones are cared for no matter what the future brings. Visit FreeWill.com/Marfan.
Susan Benvenuti is the VP, Integrated Marketing & Communications for The Marfan Foundation. She enjoys getting to know community members and sharing their unique stories. If you would like to share yours, we’d love to hear from you - get started by emailing sbenvenuti@marfan.org.