Success Story: Spina Bifida Dads Can Help Each Other

Luis Carrizoza is the proud father of nine-year-old Luz Amelia, who goes by the name of Luz. She’s a happy and “awesome” Chicago fourth grader, who has had surgeries to close her back, implant and revise a shunt, release her tethered spinal cord, remove adenoids and insert tear tubes. She’s also had MACE and Mitrofanoff surgeries.

Luis is also a very thankful man. He’s thankful for what his daughter has taught him about life, and he’s grateful that he’s been able to help other dads in the spina bifida community. He credits the Illinois Spina Bifida Association (ISBA) community with helping him be a better dad.

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Luis and his wife Enedina are still learning how to navigate all the challenges of spina bifida. Like all dads in his footsteps, he readily acknowledged that it’s not always been easy.  “When your daughter is born with spina bifida, you’re scared. You have so many medical issues. Then there are the financial and emotional stresses. We have the same challenges as our daughter. We are just like our daughter.”

A turning point for Luis and his daughter came four years ago when Luz attended her first ISBA Play Date event. ISBA Play Dates combine informational and networking sessions for parents with structured play activities for children with spina bifida and their siblings. “Luz had been depressed because she couldn’t do what other kids do. Her world was different. But when she went to her first Play Date, her eyes were opened and her depression went away. She knew she wasn’t alone. There she got to interact with kids like her.”

That first ISBA Play Date changed her life and that of her mom and dad. Luz has attended more than 25 events since that first one. Her favorite is Halloween, for which the family will show up at 1pm and not leave until 4:30 in the afternoon.

Luz has made a lot of friends from the Play Dates. She has learned that she is not the only one in this journey and that there are many kids just like her. 

“My wife and I have made so many friends thanks to our daughter,” said Luis, who works long hours as the owner-operator of Carrizoza Auto Body.

Luis refers to one of those friends as his big brother. “His daughter is three years older than Luz, but he was there for me when I was trying to cope with spina bifida matters. Sometimes you just have to have somebody to talk to — somebody who knows what you’re dealing with,” says Luis.

Now Luis acts in the same capacity for other dads. “It’s a cycle. Being a spina bifida dad,” says Luis, “is a process. There’s plenty to talk about. We all have a lot in common. There’s a routine that you have to learn. An extended family helps support you to the maximum.”

As a big brother to other dads, Luis shares with them what he’s learned. “I can tell other dads that I know the emotional and financial stresses. It helps to talk with other dads. You’re always learning more about spina bifida, its direct and indirect consequences.”

On a Saturday in July, for example, Luis was attending ISBA’s Education Conference at Morton College in Cicero, IL, to learn more about how to handle financial challenges. Frustrated with what he considered inappropriate funding for his daughter from Social Security’s Supplemental Security Income program, he learned how to step-by-step appeal his daughter’s claim to that agency.

A big Chicago Cubs fan, Luis also attended an ISBA conference session on adaptive sports because he hopes one day to be Luz’s softball coach. For the time being, though, Luz, who uses both crutches and a wheelchair, favors swimming over softball. “She loves swimming. It’s almost as if we can’t get her out of the swimming pool,” says her dad.

The day Luz refers to her dad as coach, Luis will be proud, all right. But never as proud as he is of being called dad.