Four-year-old Orville’s right arm is paralyzed and both legs affected by Acute Flaccid Myelitis; benefit set Dec. 16
By TESHA M. CHRISTENSEN
Pressing on after a life-changing event takes a village, and
Standish-Ericsson residents Elaine and Michael Young are so grateful for
theirs.
In the aftermath of their young son’s paralysis and hospitalization,
the family has been amazed at how supportive and giving people have
been, despite the family only having lived in Minnesota for a few years.
“Thanks to everyone for everything,” stated Elaine. “Having people drop off meals and stuff has been so helpful.”
Suddenly paralyzed
The summer began like any other, and the Youngs kept busy with friends and outings.
On July 4, 2018, all four members in the family were sick with a
cold, but Elaine didn’t think much of it. Six-year-old Audrey seemed the
sickest, and three-year-old
Orville just had a runny nose and a cough. Then on Tues., July 10,
Orville started running a fever of 101 degrees. His mom wondered if it
was a urinary tract infection and began treating it with
over-the-counter medications. When it still hadn’t gone away by Friday,
she began debating whether or not to bring him in before she flew out of
town for a visit with family in Northern California that weekend. They
had spent the morning playing at the neighbors, and Orville went out for
the mail when they got home.
That’s when Elaine noticed that his right hand was just hanging there.
“Buddy, can you raise your arm?” she asked him.
He couldn’t.
Elaine moved fast, and within minutes they were in the car, heading
to the only hospital the recent transplant to Minnesota knew in the
area, the Masonic Children’s Hospital.
Elaine says she already knew what this was—Acute Flaccid Myelitis
(AFM), a rare, polio-like condition caused when enteroviruses invade the
nervous system and target the spinal cord.
She had been pregnant with Orville in 2014 when there were several
cases in California that hit the news, and she’d read up on it.
Photo
left: Standish-Ericsson resident Orville Young refers to his paralyzed
right arm as his “wonky arm.” Orville has therapy appointments at
Gillette Children Specialty Healthcare in St. Paul four times a week,
and is likely to have surgery in January to move a nerve to help
stimulate movement in his paralyzed arm. A youth art show benefit to pay
for medical bills is being planned for Dec. 16, 3-6 p.m., at the Public
Functionary, 1400 12th Ave. NE, Minneapolis. (Photo by Tesha M.
Christensen)
By July 13, the doctors also suspected AFM because of the
inflammation in Orville’s spinal cord that showed up on an MRI, although
it wasn’t officially confirmed by the CDC until November.
None of the treatments they tried in the hospital worked.
“They sent us home with a kid who couldn’t walk,” recalled Elaine.
Orville and AFM
Back home, Orville’s family noticed the stark difference between what he used to be able to do and what he could do now.
His right arm wasn’t working. Everything but the hand was paralyzed.
His right leg was extremely weak. He tripped and fell a lot. His right trunk muscles were weak so getting up was hard.
Because Orville’s entire spine had been inflamed, both of his arms
and legs were weak at first, but some movement came back within the
first two weeks as the inflammation went down.
Later, they realized that his left leg had also been affected, and he
can’t stand on his tiptoes or heels. He often catches his foot and
trips when he’s moving fast.
Four months out, his stamina is still low, and he tires quickly.
Photo
right: At home, mother Elaine (left) and father Michael hook
four-year-old Orville Young up to an electrical stimulator while he
plays video games. He gets the stimulation twice a day for 15 minutes at
a time. (Photo by Tesha M. Christensen)
Orville, who turned four a month after he got sick, had been pretty
independent. Now he has trouble dressing or feeding himself. He is
right-handed, so opening doors is difficult. Pulling up his pants is
really hard.
Orville’s right bicep and deltoid are completely flaccid and have not
contracted even once since he got sick. Elaine has begun noticing that
his right arm is smaller than the other.
His right hip remains weak. If he jumps off something and lands a certain way, it’s likely that his right leg will buckle.
‘It’s just a cold’ has new meaning
Life after Orville’s illness has taken on a new routine. They juggle
Orville’s various appointments with research and have been grateful for
meals and babysitting from friends and family.
“I have a 9-5 job spending time on the phone,” acknowledged Elaine,
who is a stay-at-home mom who homeschools their children. “I keep my
ringer on now.”
She’s also “constantly paranoid,” she admitted.
“The term, ‘It’s just a cold’ means a whole lot more to me now,” agreed Michael.
Orville refers to his right arm as his “wonky arm.” His parents said
he’s pretty good about maintaining a positive spirit about his many
appointments although he does get tired of it all sometimes.
Orville goes to therapy at Gillette Children Specialty Healthcare in
St. Paul four times a week. He rides a functional electrical stimulation
bike and uses a robotic exoskeleton arm. He’s started therapy in a pool
and picked out a fun swim cap and bathrobe to use. They play games and
try different things, but there isn’t a set protocol for this and no
guarantee that it will help, according to Elaine.
At home, he is hooked up to an electrical stimulator twice a day for 15 minutes at a time.
He’s about to get a brace on his left leg to use for long walks to help keep him from falling so much.
While they work with occupational and physical therapists, Elaine and
Michael are also meeting with specialists who have successfully treated
this type of paralysis with a nerve transfer. For instance, they take a
coughing muscle and move it to the arm and then work to rewire the
brain. The Youngs anticipate a surgery in January at either Philadelphia
Shriners or in California. It will take 6-12 months after surgery to
know how effective it is.
“The hope is that he can regain function,” remarked Elaine. “But even then he’ll probably never regain 100 percent.”
Photo
left: Orville Young, age four, goes to therapy at Gillette Children
Specialty Healthcare in St. Paul four times a week. “The hope is that he
can regain function,” remarked his mother, Elaine. “But even then he’ll
probably never regain 100 percent.” (Photo submitted by Elaine E. Eller
Young)
When paralysis like this happens at such a young age, the arm doesn’t
grow as it should, and some of the kids affected have undergone
amputations.
Elaine said she was glad Orville’s doctor was straightforward with
them and didn’t sugarcoat things. “But I also decided he was going to be
wrong. I was going to do everything in my power to make him wrong,” she
stated.
A fine line to walk
Michael and Elaine are happy that Orville has a lot of body positivity,
and tells others, “I’m a buff guy.” They started nicknaming him “Lefty”
to pay attention to his strong left arm, but Orville batted back, “No,
call me Righty.”
The couple acknowledges that they have a fine line to walk between
pushing Orville to regain function and accepting him for who he is now
and letting him just be a kid.
“We can’t forget the other parts of him,” said Michael, who is a
special educator at Groves Academy. “I want him to be body positive and
pro-disability.”
They are glad that they will be able to tap into a larger network of
people, including polio survivors, to make sure Orville has a community
of people who understand the challenges he faces.
Michael doesn’t think his son understands yet how permanent the paralysis is.
One of the hardest things for him and Elaine was a few weeks out from
Orville’s hospitalization when they realized how little control they
have over this illness. “We can’t protect him from it,” Michael stated.
“We can’t promise him that we can make it better.”
Elaine has found support in a Facebook group populated by families
from around the world who are dealing with this polio-like illness.
“There are cases from 30 years ago,” Elaine pointed out. “This isn’t a
new thing. The new thing is the numbers. It’s happening in larger
amounts.”
To help spread awareness and work on solutions, the Youngs and other
Minnesota families met with Senator Amy Klobuchar and staff from the
Minnesota Department of Health in October.
About AFM
Overall, the Youngs feel lucky that Orville’s case was mild as it has been. Others can’t walk.
Most people affected by AFM are children under the age of 10. While
the polio vaccine guards against poliovirus (a type of enterovirus),
there is no vaccine for the strain of enterovirus that Orville
contracted. Symptoms may include facial-muscle weakness, issues moving
the eyes or droopy eyelids, issues in swallowing, or slurred speech. It
can also lead to paralysis, respiratory issues, and death.
There have been two cases of AFM in Minnesota in July, and another
seven from the end of September/beginning of October. The kids have
nothing in common, did not come in contact with each other, and come
from all over the state, observed Elaine.
Parents are advised to keep a watchful eye for AFM symptoms and bring
a child to the doctor immediately if they experience any limb weakness,
facial drooping, and trouble swallowing or speaking.
More at
www.myelitis.org.
Benefit for Orville planned
A benefit youth art show for Orville the Awesome is being planned for
Sun., Dec. 16, 3-6pm at the Public Functionary, 1400 12th Ave. NE,
Minneapolis. (
https://theawesomeartshow.wixsite.com/orvilletheawesome)
This will be a celebration of art and community with live bluegrass
music from No Man’s String Band, face painting from homeschooler Jesica
Gibson of Painted Imagination, and a silent auction and raffle featuring
art, handmade goods, tickets, passes, and gift baskets.
Admission is a suggested $5. Proceeds will go towards Orville’s medical bills.
The event is being organized by South Minneapolis resident Jenna
Bergendahl, who is part of the homeschool group, Little Urban Explorers,
that the Youngs are also members of.
“I think part of being in community with each other is helping each
other, and I love the idea of the homeschool community coming together
for each other in this way,” stated Bergendahl.
She has been delighted by the response of homeschoolers and community
members who have donated items to be in the silent auction and raffle,
as well as those who have opted to be part of the youth art show.
In addition to individual submissions, courageous heARTS at 2235 E. 38th St. is involved.
“I hope this will be a powerful experience for the kids—not only to
have their art treated with the kind of respect usually reserved for
adult, professional artists—but also to know that they made a donation
to a local family with their submission and to see a little bit of that
impact at the show,” remarked Bergendahl.
“I know many parents are looking for ways to engage their kids in the
community, and helping them see themselves as people who contribute,
share, and lend what they can to others. I think that this event will be
a very hands-on, tangible way for young people to see what’s possible
when we come together for each other. It’s also going to be a lot of
fun!”
Photo
right: A Go Fund Me page has also been set up for the family to help
purchase a child-size functional electrical stimulation bike for Orville
to use at home. Right now he’s just able to ride the one at Gillette
once a week. Learn more at www.gofundme.com/fes-bike-for-orville. As of Messenger press time they had raised $15,147. (Photo by Elaine E. Eller Young)
Article printed in the December 2018 Longfellow/Nokomis Messenger.