Photos courtesy of Mariana Cruzada
Story by Ben Shaw / Contributing Writer
When Orlando residents Mariana and Joel Cruzada saw Hurricane Irma barreling across the Atlantic heading straight for Florida, they knew evacuation was a necessity. Their three children, Elijah, 16, Mahri, 13, and Sari, 10, have a rare genetic disorder called Shwachman-Diamond Syndrome, which causes abnormal pancreatic development and bone marrow dysfunction. They also have a rare neurological disease that affects the body’s ability to regulate normal body functions, like temperature control and another disorder that can bring on a fever. The Cruzadas need access to specialized medical care at a moment’s notice.
Marina and Joel, though no longer married, raise their three children together. They knew toughing out a hurricane offered risks they didn’t want to take. One cut by flying debris or an uncontrolled fever could quickly turn into a life or death situation
Mariana knows the exact distance, “1.2 miles,” from their home to their hospital in Orlando. She has to know this, for her kid’s sake. It would only take one downed tree to block access to the specialist her children need in case of an emergency.
“SDS is such a rare disease not many people know how to handle it,” Mariana said.
After much prayer, the Cruzadas made the decision to leave their home and head for Tennessee before Irma arrived, although they didn’t know where they could go or how to pay for it. Mariana is a member of an SDS support group on Facebook that connects people who deal with this rare disorder and creates a nationwide community of supporters who understand. Mariana requested recommendations for children’s hospitals in the Tennessee area on the SDS group page, and almost immediately she received a message from a member, Honey Denson, in Murfreesboro, whose son also has SDS.
She told Mariana about the Monroe Carell Jr. Children’s Hospital at Vanderbilt University. Mariana shared that “as a team of parents, we help each other, and that’s what Honey did.” Denson even called ahead to the hospital to let them know that three children with SDS would soon be in the area.
Knowing they were in a safe location that met their medical needs was a relief. However, with only enough funds to get to Tennessee and then back home, they still needed to find a place to stay. That’s where Missions Director Josh Markham at First United Methodist Church of Murfreesboro was able to help.
Denson, who is a member of the church, contacted Markham, and after hearing the needs of the Cruzada family, he set out to help. He secured a hotel room in town within a few hours, even though rooms were already becoming hard to find due to the number of Florida folks leaving their home state. Mariana said when arriving in town after a 24-hour trip, because of traffic volume, they went to the front desk and found that they had already been checked in and nearly $450 worth of gift cards for local restaurants were waiting for them.
Another family from FUMC learned that the Cruzadas arrived and wanted to help out, too.
“Jennifer Sheets contacted me to see if there is something else (the Cruzadas) needed,” Markham said. “I told her they would need some activities to do with the kids while (they are) here.”
The Sheets have a son who has been fighting Leukemia since he was 3-years-old. The two families paired up and toured the local sights, ate dinner and went to a local bowling alley.
“To me, I never considered Tennessee my community —I do now— I absolutely do. I have family members who have never truly taken the time to understand what affects my kids … but Honey did because she is a part of our family … I know there is no way to say thank you, but I know for sure that when I go back to my home community, I’ll give more. I’ll pay it forward,” Mariana said.
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