For Amanda Archuleta, the hand sanitizer shortage is more than an inconvenience.

It's frightening. 

"It is scary to think we may not be able to find more if we need it," said Archuleta, whose 11-year-old, Zander, is severely immune-compromised and receives monthly infusions at a chemotherapy center.

The isolation and supply shortages accompanying the coronavirus pandemic are trying for many in Colorado Springs, but even more so for parents raising medically fragile children.

The temporary shuttering of libraries left Zander, who is home-schooled, "absolutely devastated," his mother said.

"He is very limited on his outings this time of year even without a pandemic" due to his medical fragility, Archuleta said. "He lives for his trips to the library and the occasional movie or symphony, which we use as a motivator to get through tests like MRIs and his painful transfusions.

"Now he's looking at zero reasons, except appointments, to leave the house, and his anxiety is very high. Zander has literally lost his few motivations to keep hope this time of year.

"It's heartbreaking to me as a mom that I can't fix it."

What has become a new normal for the rest of the world — limited trips to the store and interaction with others — is old hat to Zander's family. Doctors aren't sure how Zander has lived as long as he has, Archuleta said.

"We live on borrowed time. An ear infection has almost killed my son, so we live every day scared of every illness."

And now, this.

"I'm trying very hard to stay positive, but my kids are very frustrated and confused, because what it really comes down to is people weren't even following simple hygiene suggestions," she said. "If they had, this disruption of life wouldn't have even came to fruition."

For Emilee Longstaff, a coronavirus diagnosis for any of her four children, all of whom have special needs, would likely mean hospitalization — if only for seizure control.

"Any illness typically lowers their seizure threshold," said Longstaff, whose children's medical conditions range from epilepsy and feeding disorders to autism.

Two of her children are currently on oxygen. Another has a central line placed near his heart for IV nutrition.

"The cleanliness that 'normal' people are experiencing now, as far as washing hands and sanitizing, is always a part of our daily life," she said. "Not being able take the kids to the park and being constantly in each other's space is hard.

"Sanity is the biggest obstacle."

Jenna Sheidenberger worries that her 3-year-old son, Westley — who has polymicrogyria, cerebral palsy and epilepsy — might developmentally regress during the coronavirus pandemic due to his school being closed and outside therapies being more difficult and dangerous to access.

"We're doing what we can at home, but it doesn't compare" to the typical services he receives in the community, she said.

Her worst fear is not the virus itself, but the life-threatening seizures it could cause. Or, that her son won't receive adequate care at a hospital due to overcrowding.

But she's found a silver lining in the panic and pandemonium. 

"If the world was always this worried about spreading germs, it would be a much healthier place," she said. "Now, since everyone has an awareness, the immunocompromised are less likely to get sick.

"I do hope these habits of being clean stick all year round."

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