Your Catholic Neighbor
Doing her part to help others
Lanari produces book for expectant parents with Down syndrome babies
By Joanne Flemming
DARBOY -- When Kristin Hoffmann Lanari and her brother Greg were attending Appleton public schools, fellow students taunted them about their younger sister Lauren, who has Down syndrome.
One girl, Lanari said, went so far as to say that Lauren was a punishment from God for something the Hoffmann family had done. That statement at first worried Lanari. Then it became a turning point in her life. She concluded that God had given Lauren to her family "to make a difference in the community and in the world."
Lanari volunteered to help in activities that involved her sister.
She decided that "I'm going to be proud of my sister and try to change perceptions of her."
A second turning point came last summer when Lanari read a speech about prenatal testing given at the 2007 National Down Syndrome Congress by Patricia Bauer, a Washington Post reporter and mother of a grown daughter with Down syndrome.
Lanari said she was horrified to learn about the number of women who abort their babies after the testing tells them the children may have Down syndrome.
According to Bauer, "As a result of recent changes in technology and standards of care, women are undergoing prenatal diagnostics for Down syndrome in unprecedented numbers - often multiple times during their pregnancies. When the condition is detected, they are having abortions at rates that are thought to approach 90 percent."
Lanari, like Bauer, was puzzled by this information when she considered how Lauren and other people with Down syndrome achieve and thrive within their families and communities.
"We worry," added Bauer, "that the relentlessness of genetic testing is amplifying stigma and bias against the 350,000 flesh-and-blood Americans who have the condition as well as people who have other conditions that are now or soon will be prenatally discoverable."
Lanari felt that one reason doctors were advocating prenatal testing for Down syndrome is because they do not have enough education "about Down's people."
She decided to work to change that perspective "even in a small way" by establishing a mentorship group of families with members who have Down syndrome. Doctors could then refer these mentors to parents who are expecting babies with that condition.
The mentors, Lanari thought, could talk about "what is was really like, that it was not all doom and gloom and the Down syndrome members could live very rewarding lives in families that love and care for them."
She approached the ARC-Fox Cities and the Fox Valley Sibling Support Network about starting the mentorship group and learned about the hurdles she faced in setting one up.
She decided instead to compile a book with stories by and about Fox Valley families who faced the challenges Down syndrome presents. The book would be distributed to medical offices, hospitals and schools. When parents learned that their baby may have Down syndrome, the doctor would recommend they read Lanari's book.
Harriet Redman, Sibling Support Network executive director, helped Lanari apply for a $3,500 DAWN grant from the Wisconsin Board for People with Developmental Disabilities for the book. Such grants are used for grassroots advocacy, Lanari explained.
She said she received it at the end of February. It will be used for production and distribution of the publication.
Right now she wants to collect 15 to 20 stories from families about their Down syndrome members. Each story must be 750 words or less. The deadline is the end of June.
Lanari and her brother Greg will contribute an essay about Lauren. She added that Greg, who graduated from the University of Wisconsin-Madison in spring with majors in creative writing and finance, will edit the book.
In July, Lanari and husband Tom, both of whom are free-lance photographers, hope to gather the contributing families in a Fox Valley park and take their pictures for the book.
She hopes the book will be published and distributed in early 2009.
When asked what she would write about Lauren, Lanari described her sibling as "wonderful, friendly." A senior in fall at Appleton North High School, Lauren is a pianist, who loves to dance and cook and bake, especially cookies. She takes piano lessons from a music therapist who works with people who have disabilities.
Lanari, who is Lauren's standby guardian, said she enjoys "hanging out with and watching movies" with her sister.
A cantor, choir member and eucharistic minister at St. Joseph, she talked about how her sister has enriched her faith. When God gave her to the Hoffmann family, "he knew she would draw our family together and make us stronger, that she would be around people that would love her and she would love."
For information about Lanari's book, e-mail her at email@example.com or phone her evenings at (920)540-2488.