PEOPLE: Almost 46, a gifted musician with cognitive
impairments will set out on her own.
January 7, 2001
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WILLIAMS SYNDROME
•Williams syndrome is a rare genetic
disorder that causes medical and
developmental problems. It occurs in about
one of every 20,000 births.
•[people with Williams Syndrome] have an average IQ of 60,
classifying them as mildly to moderately
retarded. But many have rich vocabularies, a
mysteriously acute musicality and perfect
pitch.
•Most Williams syndrome people have similar
facial features: a small upturned nose, full
lips, small chin and puffiness around the
eyes.
•Individuals with Williams syndrome are
missing genetic material on chromosome 7,
including the gene that makes the protein
elastin, which provides strength and
elasticity to vessel walls.
More information:
•The Williams Syndrome Foundation,
http://www.wsf.org/.
•The William Syndrome Association,
http://www.williams-syndrome.org/.
• The Berkshire Hills Music Academy,
http://www.berkshirehills.org/.
For more on Williams
Syndrome by this writer, please read:
From
Genetic Illness Springs an Ode to Joy
-
by Teri Sforza,
Orange County (CA) Register, April 29,
2006
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By TERI SFORZA
The Orange County Register
His baby girl will be 46 years old soon. She can't
make change for a dollar. Or add 5 and 6 correctly.
With an IQ of 65, she can't judge distances well
enough to cross the street alone.
She can't read music, either, but she's an
operatic soprano who can sing Schubert pieces 12
minutes long, in German, entirely from memory.
"Daddy," she still calls him, with a tender softness
in her voice. He has been her benefactor, her
protector, her manager, as well as her father. And
now, after all these years, she's about to leave
home for good.
"It's an amazing thing, that now, at our age, our
daughter is going to be independent," said Howard
Lenhoff, 71, of Costa Mesa, the father of Gloria
Lenhoff - musical wonder woman, and musical mystery.
"I'm not nervous at all," Gloria said. "I'm
really, really happy."
Gloria has Williams syndrome, a rare condition
caused by the loss of a tiny piece of genetic
material from chromosome 7. [people with Williams Syndrome] share an
uncanny number of characteristics, in addition to a
strikingly intense love of music: They look like the
pixies you see in children's storybooks. They have
acutely sensitive hearing. They often have heart
problems. They speak with remarkably rich
vocabularies and are so universally warm,
compassionate and outgoing that they're said to
possess "cocktail-party" personalities.
But they need care, and Howard Lenhoff, a retired
biology professor at the University of California,
Irvine, and his wife, Sylvia, have always provided
meticulous attention for Gloria. They made sure her
handicaps never stood in the way of her incredible
musical gifts, which include a rich operatic
soprano, a jaunty way with the accordion and a
musical memory that allowed her to memorize more
than 2,000 songs in 28 different languages.
The Lenhoffs' big worry has always been: What
will happen to Gloria after they're gone?
They breathe easier now that the plans have been
laid.
This month, Gloria will leave Orange County and
relocate to The Baddour Center in Senatobia, Miss.,
home to 180 people with mild to moderate mental
retardation. It's a community sprawled across 120
rolling green acres, associated with the United
Methodist Church. Its big attraction for Gloria: a
traveling choir called The Miracles that is on the
road 30 weekends a year, touring America and logging
thousands of miles.
"I saw a video about it and I said, 'Daddy,
that's it. I want to go there. I want to live
there,' " Gloria said.
She gave it a trial run in October, and it was
everything she hoped for.
"I love it," Gloria said. "It's really neat, and
I have a nice roommate, and I have a lot of friends,
and I enjoy being with The Miracles."
Indeed. In November, Gloria was the featured
soloist when The Miracles performed at the Kennedy
Center in Washington, D.C.
"I've been practicing a lot," she said. "I
learned seven new songs before I went to Baddour."
Gloria's musical goodbye to Orange County will be
at 6 p.m. Friday at Congregation B'nai Israel in
Tustin, where she'll chant part of the Friday
evening religious services.
Gloria's father is confident that she will be
well taken care of in Mississippi, and that her
musical gifts will continue to mature. She'll keep
getting private music lessons in voice and
accordion, in addition to the work she'll do with
The Miracles.
The Miracles sing mostly religious music -
Christian religious music. Gloria is Jewish.
"It's not a problem with her to sing the praise
of Jesus, and she's sincere about it," Lenhoff said.
The Lenhoffs are selling their Costa Mesa home
and will buy a condominium in Mississippi so they
can spend the winters close to Gloria. They'll spend
summers in the Northern California town of Crescent
City.
There have been other major milestones in the
Lenhoffs' lives. They've been working for years
trying to raise enough money to open a bona fide
music academy for mentally impaired people. In
October, Gloria sang at a benefit concert in Boston
with two members of the rock group Aerosmith, which
raised about $1 million. In the fall, the academy
will finally become reality.
"It's a dream come true," said Lenhoff.
The Berkshire Hills Music Academy will be located
in South Hadley, Mass., and is scheduled to accept
its first students in September. It will be the
first institution in America dedicated to the
musicianship of cognitively impaired people.
Its two-year certificate program will enroll
about 25 students each year. In addition to music,
they'll learn skills to live independent lives.
Tuition and other costs will total about $25,000 a
year, but scholarships will be available, said
Berkshire spokeswoman Sharon Libera.
"We're going to offer people who have talent the
opportunity and encouragement to pursue their
dreams."
The school will work to place its students with
day-care centers, nursing homes and other places
where their music can do good after they graduate.
"I am professionally and personally excited about
the opportunities that the Berkshire Hills Music
Academy will offer these young adults who have a
wealth of talent and ability to share," said Greg A.
Williams, Berkshire's dean of studies.
Lenhoff is on its academic advisory board, and
Gloria will continue to do concerts to raise money
for it.
But Gloria won't be attending, since the academy
is geared for the college-age crowd. But she's had a
busy year, singing in Vermont, in Spain, in San
Diego and in Washington D.C., and is now preparing
for her big move to the deep South.
"I'd like to say thank you to everyone in Orange
County for being so friendly and so loving and so
caring, and for giving me the support when I needed
it," Gloria said. "Thank you. Thanks for helping me.
I love you all."
