Family has help on a challenging
journey
By Kyung
M. Song
Seattle Times staff reporter
 Imagine
a 2-year-old who never throws tantrums, knows no stranger anxiety
and is ever camera-ready with an enchanting smile.
Johanna Weisenfeld is that child.
The traits that make Johanna so captivating to her family and
strangers, however, mask a devastating disorder. She was born with a
rare genetic disorder called Angelman syndrome. "Angels" like
Johanna share singular symptoms: chronic laughter and smiles,
flapping arms, no speech and mental impairment.
"Ninety-five percent of the time she's happy," says her mother,
Jolena Weisenfeld. "At this age, it actually has been a lot of fun."
But the children face challenges as they mature. Their
irrepressibly sunny dispositions, for example, become liabilities
beyond childhood.
"If I'm crying, the harder I cry, the harder she'll laugh,"
Jolena says.
Johanna also will never live independently.
With regular counseling from Bellevue's Kindering Center, Jolena
and her husband, John Weisenfeld, are learning how to face their
daughter's journey to adulthood.
The whole Weisenfeld family benefits from Kindering's services.
Johanna, 2-½, receives three hours of therapy a week, including
feeding therapy to help her digest more solid foods. Jolena and John
both get free individual therapy. Each also belongs to a support
group for mothers and fathers of children who are disabled or
medically fragile. In a few years, baby Benjamin, almost 1, will
attend Kindering's Sibshops, workshops for kids who live in the
shadows of brothers or sisters with special needs.
John Weisenfeld, a Microsoft software engineer, grew up with an
older brother with Down syndrome. He knows intimately that raising a
child with profound disabilities creates hardships that permeate
every fiber of a family's life. He understands why some parents of
disabled children look only one day ahead "because if you see too
far out, you might get paralyzed."
The Weisenfelds work in wordless tandem to prevent harm to their
hyperkinetic daughter. Johanna, like all Angelman kids, moves
nonstop. Drawers, doors, garbage cans, purses, tissue boxes — all
irresistible magnets for Johanna's perpetually moving hands.
An estimated 250 American babies are born with Angelman syndrome
each year. No one recognized its symptoms in a newborn Johanna. She
couldn't suckle at the breast. Nurses at Overlake Hospital Medical
Center in Bellevue said they'd never seen such a wiggly infant.
"We just thought, 'Oh, great. Our baby is smiling at two months,'
" Jolena says.
Only when Johanna started missing her milestones — rolling over,
sitting up — did her family realize that something might be
seriously amiss. A genetic test when Johanna was 1 gave a name to
her condition.
Johanna's parents for now are determined to savor her unique
gifts. Johanna is never bored. Crowds at malls adore her. She beams
from every photo.
"There are definite advantages," Jolena says. "She is a joy."
Kindering Center
 The
agency works with 1,500 special-needs infants and children
each year. It offers services for families of children with Down
syndrome, cerebral palsy and other medical or developmental
problems. Kindering Center, founded in 1962, had $4.5 million in
revenue in 2005, $1.2 million of which came from private donations.
Program and government fees and insurance made up the rest.
Article published Dec 20, 2006
Photo by: John Lok,
The Seattle Times
Kyung Song: 206-464-2423 or
ksong@seattletimes.com
Copyright © 2006 The Seattle Times Company
|
