Meet "Chicago" Joe
Resilient
Favorite Things:
+ Basketball
+ Football
+ X-box Favorite Game: NBA 2K
+ Math
+ Being a big brother to Rose and Vince
+ Riding his bike and playing with friends
+ Hanging with his cousins
Conqured:
+ Arachnoid cyst removal in low back
+ Open Heart surgery
+ Fusion of the spine with rod placement and a revision
+ Bilateral Foot surgery
+ Contacts
Favorite Quote:
+ "Be thankful for the struggles you go through. They make you stronger, wiser, and humble. Don’t let them break you, Let them make you."
Meet "Chicago" Joe
Joe was born with neonatal Marfan syndrome and diagnosed as an infant. I will never forget the day he was born. I required an emergency cesarean section due to Joe having heart decelerations.
The doctor did a routine exam in the delivery room, Joe had very long thin fingers at birth and she asked me, if anyone in my family or husband's family had Marfan Syndrome? We had both never heard of Marfan syndrome.
We went home and Joe was thriving. At about 5 months old I noticed his spine starting to curve and his chest seemed to stick out more than normal. I remembered that doctor mentioning Marfan Syndrome right after he was born, so I did my own investigating. Joe had many of the characteristics. We went to see a cardiologist and sure enough he had aortic dilation. Now, our neonatal Marfan Syndrome journey had begun!
The endless doctors appointments and the sleepless nights will never trump the gift that living with neonatal Marfan Syndrome can bring. Joe has taught us more about life in his 10 years than most people ever get to learn. Joe has touched the lives of so many people young and old in our community. His determination and love for life is contagious.
We NEVER hear him complain! After all of the surgeries and appointments and restrictions, Joe never uses his physical restrictions as an excuse. It just pushes him harder! He motivates us everyday. He is our true hero and he is so loved!
Joe is in fourth grade and he is a great student! He loves math. Joe has now been a team manager the last 2 years. First for his travel basketball then on his flag football team. He loves the strategy and coming up with new plays. Joe's goal in life is to be a Commissioner of a pro sports league. Go Joe Go!
A little piece of advice that I can share from my experience is don't let your highs get too high or lows too low. Having a child with a chronic syndrome such as neonatal Marfan is a journey, you need to take day by day. Another piece of advice is if you have other children don't forget about their needs too. It affects them just as much as you. There is a lot of attention the child living with neonatal Marfan gets and it's extremely important to give that time to your other children as well.
We are very thankful for all the parents we have met along the way thus far. It is comforting knowing that someone understands the journey: the struggles as well as the joys! I am confident with research and modern medicine we can make a difference!
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Dated: 26 February 2025
