For families caring for medically-complex loved ones, pandemic brings extra challenges, fears

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For families caring for immuno-compromised loved ones, each day is a struggle to survive. And now it is exponentially more challenging during the pandemic.

Kelly Cervantes is a fierce advocate and is using her voice for the families standing firm inside to protect their loved ones from the virus on the other side of the door.

As the general public gets a glimpse of what it’s like to live life on continuous high alert, Cervantes said it’s the norm for families caring for a medically complex loved one.

“At the best of times during flu season we are doing 20-second hand washes,” she said.  “And we have the Purel dispenser on our wall. We are limiting our time outside the house.”

It was their daily routine. And like many families caring for children with special medical needs, there were frequent trips to the hospital.

“Certainly it was the case for Adelaide,” she said. “If she got a cold we landed in the hospital. I can’t even imagine what this virus would have done to her.”

Adelaide, the daughter of Cervantes and her husband Miguel, who starred in the Chicago run of “Hamilton,” suffered with a severe form of pediatric epilepsy, as well as other co-existing conditions. She required around the clock care before she passed away in October.

But the family vowed to continue the fight for others just like their beautiful daughter.

“Reach out to those families you know,” Cervantes said. “Can you pick up medications for them? Can you pick up groceries? Don’t be offended when they ask you to leave it on the doorstep.”

Worries about a continuous supply of basic medical supplies, syringes, gloves, masks, tubing, ventilators, top their list of concerns.

“Leaving the medical supplies –  the gloves, the masks –  for those that desperately need them,” she said. “This community is not as worried about running out of toilet paper as much as they are running out of masks to keep their loved ones safe.”

The need for extra support is critical in a time when essential resources are stretched thin and parents are taking on extra responsibilities. 

“Imagine all of the families that are homeschooling, but now on top of that, their child receives their PT, their OT, their speech therapy services at school,” Cervantes said. “Perhaps they had home health aides that are no longer able to come.”

This immune compromised, medically complex special needs community is one of the strongest that I have ever been a part of. This is not a club you choose to be a part of, but my goodness is this community strong and they know how to push through and persevere. But we need the entire community, entire world, to work together to keep everybody safe. So it comes down to all of us.

Cervantes said there is a real concern among families about the availability of beds and life-saving equipment in the event a medically fragile child ends up in the hospital during the pandemic. That’s why she is encouraging everyone to stay home and help stop the spread of the virus.

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