Long Island family asks people to wear masks to protect daughter who has rare disease
RIVERHEAD, New York -- As you step into the Benthal's backyard you can't help but notice a bright yellow shack called 'Jo's Cottage'. This bright house belongs to Johanna, the Benthal's youngest daughter, who has had over 100 brain surgeries since she was born.
The shack is her art space, where she releases her creativity and spends the majority of her time - especially since it's not the best idea for her to go anywhere due to the coronavirus pandemic.
Johanna's parents, Eileen and Steve, have had to wear masks and other varieties of PPE equipment throughout Johanna's life, for the past 23 years.
Johanna was diagnosed at 3-months-old with a large mass on her brain stem.
In the beginning, they thought after the initial first brain surgery that this was going to be the only one they would have to get through. However, later on, Johanna was diagnosed again with a rare disease called CCM3 - which is a genetic mutation.
Johanna's three older siblings who were between the ages of three and nine had to wear masks to meet their baby sister for the first time.
"It was an adjustment for them, but it was no big deal," said Eileen. "I think we just didn't present it as a big deal, this is just what we do to keep Johanna safe. I realized that over the years, learning really from the healthcare professionals and the hospitalizations that we've had, masks work."
The current New York State mandate requires everyone to wear a face-covering when outside their home if unable to maintain at least 6 feet of distance from others. However, across the country, people have expressed that they have the constitutional right not to wear one, which concerned Eileen greatly for Johanna's health.
"Any time healthcare issues get politicized its people that lose," said Eileen. "When you find simple solutions that can help, like wearing a mask, just do it. It'll help us get to the place where we find a bigger solution."
In addition to Johanna's cottage where she displays and creates art, the Benthals now have a chicken coop where they plan to start selling farm-fresh eggs to the neighborhood.
Taking care of the chickens has been a great family activity during quarantine and Johanna is excited about starting her business.
They have a name for each chicken and feed them blueberries daily. Johanna was working with a program at the local donut shop, but her family decided that it would be the safest to keep her at home for now even though Long Island is currently in phase 4 of reopening.
Before the pandemic, Johanna would have to go into Manhattan to see her doctors at the New York University Neurosurgery offices at least twice a month.
Recently, Johanna and Eileen were finally able to go back and took the proper precautions so Johanna could do her bran MRI scans while maintaining social distancing. One of the doctors there has worked with Johanna since she was 18-months-old, so it was very exciting for them to reunite once again after months of not seeing each other.
"We'll get through this, we know we'll get through this," said Eileen. "Always underneath it, all is holding on to the hope."
Eileen hopes that Johanna's story will inspire people to think of others before they make the decision not to wear a mask.
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