Meet Rocco
An Old Soul
Favorite Things:
+ Video Games (being Red Dead Redemption)
+ Walking encyclopedia on WWI and WWII
+ Giving and receiving hugs
+ Holds a treasury of facts in his brain
+ Dreams of traveling to Europe
+ Wants to be an attorney
Conqured:
+ Valve Sparing Aortic root and ascending aorta replacement.
+ Reconstructed Aortic Valve leaflets January 2025.
Roccco's Mom's Wisdom:
"Each and every child diagnosed with neonatal Marfan is their own trailblazer in this journey. Take the time to mourn through the diagnosis and then buckle up and get ready to advocate for your child. [. . .] There is still so much to be happy about." -- Rocco's Mom
Meet Rocco
Hi. Meet Rocco
He is currently 11 years old and in the 6th grade of middle school. He loves to play video games with his favorite game being Red Dead Redemption. Rocco is an encyclopedia of information on WWI and WWII. He loves to give and receive hugs as well as witty commentary. He is the keeper of all memories, master of debates, and holds a treasury of facts within his brain. People always refer to him as being the ultimate old soul. Rocco would love to be an attorney like his aunt one day. He dreams of traveling to Europe.
Rocco was first diagnosed at birth, neonatologist noticed his familiar features and heard a heart murmur which set things in motion to have diagnosis confirmed. In January 2025, Rocco had his bicuspid aortic valve leaflets reconstructed to operate functionally better, his aortic root and ascending aorta were both replaced. Rocco is set for a lensectomy of both eyes in 2025.
What life is like with neonatal Marfan?
Navigating neonatal Marfan is the biggest marathon in life that you feel so unprepared for as a parent. As a mother, from the very first day of my sons birth, I was sent into fight or flight mode. I quickly realized I am the one in charge of keeping this little guy safe and taken care of from a medical standpoint. I have to make the calls and get him the appointments, I have to follow up, I have to research and make decisions that I feel work best for him. Ultimately his body is in charge and making the decisions but I need to be ready to face the changes and challenges that come up as we navigate growing up with this condition. Life with Marfan syndrome is something I didn’t sign up for, but that life is something I will never stop fighting for. His happiness, his life is worth every last tear and heartache.
What advice do you have for parents and children affected by neonatal Marfan?
Each and every child diagnosed with neonatal Marfan is their own trailblazer in this journey. Take the time to mourn through the diagnosis and then buckle up and get ready to advocate for your child. From proper medication dosages, to adequate care, to making the hard calls, to preparing for the larger procedures as they come up. It’s all apart of this journey you are now on. There is still so much to be happy about even living with Marfan. Reaching out to parents that had already dredged through the rough waters, lived through the uncertainties, stood in these shoes before- that was absolutely invaluable to this lost mom. Forever grateful to the group of moms that took me under their wings in the very beginning of our journey.
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You can learn more about Rocco's family journey here and here.
Dated: 17 February 2025
