For Arizona Families With Immunocompromised Kids, The Pandemic Is A Nightmare. A Nonprofit Is Helping Them
Like most parents in the U.S., Emily Hangen and her husband are stuck at home trying to keep their four children busy with school work. But their biggest challenge is to keep all of them healthy in Winslow, where the number of coronavirus cases grows daily. The Hangens' youngest, Timothy, who is 3, has several health conditions that make him especially vulnerable to COVID-19.
“If one of us were to get it, we would lose Timothy,” Hangen said. “If he gets coronavirus, he would no longer be with us. His little body could not fight it.”
When Timothy was a baby, his doctors discovered he had cystic fibrosis and epilepsy. More recently they diagnosed him with leukodystrophy, a rare genetic disease that robs his brain of several functions including the ability to breathe. Timothy may be eligible for treatments that would prolong his life but those tests have been put on hold because of COVID-19.
“It’s a huge possibility that we will have completely missed that window of opportunity,” Hangen said. “He could live anywhere from six months to possibly 10 years but we have no clue right now.”
Emily’s husband was exposed to the coronavirus where he worked as a cook. He self-quarantined at home for two weeks away from the rest of the family, then decided the risk wasn’t worth it, so he didn’t return to work.
In the same community, Candace Sharp is a single parent raising three kids under 4, including Xavier, her 3-year-old who has chronic lung disease, sleep apnea and asthma.
Sharp works at an auto parts store and says she’s constantly cleaning to prevent any potential spread of the virus to her son.
“If he even goes outside and he’ll get a little bit of a runny nose just because it’s cold I’m like, ‘oh crap is he sick?’” Sharp said. “I start checking his temperature. And I’m like freaking out. It adds a lot of extra stress especially with having to go to work all the time and being exposed to everybody that decides to come into the store.”
Both Sharp and the Hangens rely heavily on Michelle Simmons, their HealthySteps specialist, a child development expert who works with pediatricians to look for signs of developmental delays or stress in the home.
“It’s amazing what she does,” Sharp said. “If I didn’t have her in my corner then I definitely don’t think that I would be where I am today with these kids.”
COVID-19 is scary for many. But for families with children who have severely compromised immune systems, it’s a nightmare. One nonprofit program is working to help those families.
Simmons helped Sharp figure out her health insurance and get Xavier’s prescriptions filled on time. Simmons says she does everything from coordinating specialists to ensuring families have food and necessities.
“A lot of it is linking families to community resources,” Simmons said. “If a family needed diapers, the Baptist Church in town has a diaper bank. Linking them to domestic violence resources if need be, helping them with referrals to early intervention services.”
HealthySteps began 25 years ago to help mostly low-income families after studies showed how critical a child’s first years were. The pediatrician’s office was the perfect place to reach parents and to provide services. If they want to keep their Medicaid and WIC benefits, they have to come to regular check-ups.
“A baby who’s exposed to high levels of stress — what we call toxic stress — is disproportionately negatively affected because that brain is such a sponge,” said Rahil Briggs, the national director of HealthySteps.
And as millions of people are laid off, parents may be especially stressed.
“Babies rely on parents to regulate them,” Briggs said. “If a parent is able to take some deep breaths not bristling with anxiety they can regulate that baby. But as parents are incredibly stressed right now thinking about food on the table, thinking about their elderly own parents, babies pick up on that.”
One of the things that HealthySteps specialists regularly screen for is depression.
“We’re hearing from some of our HealthySteps specialists that they are making referrals and offering maternal depression interventions daily right now since COVID,” Briggs said.
But Briggs says HealthySteps is one of many nonprofits struggling because the multiple ways the program is supported — Medicaid, state budgets, philanthropy — are all at risk of being cut.
For families like the Sharps and Hangens, they don’t know what they’d do without that support.