Summer 2009 | Caring for creation
A voice when they couldn't speak
By Jeff Kurowski
Three parents have developed unsought advocacy skills out of a need to speak up on behalf of their children and others facing similar challenges
American author and educational reformer Dorothy Canfield Fisher once said, “A mother is not a person to lean on, but a person to make leaning unnecessary.”
Her words ring true for these alums who have come to serve as advocates not only for their own children, but for others facing similar challenges.
Raising money for research
|Christine Schlegel Brown
’93 and sons Kellen, left, and Connor.
Christine Schlegel Brown ’93 will never forget the moment her second child, Connor, was diagnosed with phenylketonuria (PKU), a genetic disorder where the body is missing an enzyme that produces protein.
“For my husband, Kevin, and I, it was just devastating,” she says. “You hold this baby in your hands, and then he starts treatment within 10 days of life. Luckily, there is a treatment for PKU.”
Two years later, a newborn screening revealed that the Browns’ third son, Kellen, now 1, also has the metabolic disease. Eldest son Keagan is PKU-free. Keeping Connor, now 3, and Kellen healthy requires a low-protein diet and, as an essential supplement, a synthetic formula.
“It’s very expensive,” says Schlegel Brown. “The formula is approximately $40,000 a year. It’s also more costly buying food for the boys. For example, a package of low-protein spaghetti is $11.24.”
PKU is diagnosed in one of every 14,000 births in the United States. If treatment is not started within the first few weeks of life, a child may develop mental retardation or neurological problems.
Schlegel Brown is thankful to be living in the state of Wisconsin, which has insurance mandates for PKU treatment.
“I was leaving Wisconsin after I graduated and never coming back,” she says. “I had developed my own major, global peace and justice studies with an emphasis in Africa. I was working out of Washington, D.C., and traveling to Africa to do field research, conflict resolution, and work with human rights development and fundraising. St. Norbert taught me well. I knew I wanted to do something involving social justice.”
Schlegel Brown is now active in assisting other families dealing with the disease. She serves on the board of directors for PKU and Allied Disorders of Wisconsin and was recently appointed the first executive director of the National PKU Alliance.
“We raise money through walks and fundraisers for research,” she says. “We offer cooking classes and hold a conference each year with breakout sessions.”
Progress has been made through organized efforts. “The first drug for PKU has been approved by the FDA. The only way you create change is when you get together and push for it.”
Parenting children with autism can be challenging, but
Chelsea (Buchman) Budde ’95 says it has also been a “wonderful blessing.” Her son, Justus, 9, was diagnosed close to the birth of her daughter, Noelle, 6, who also has autism spectrum disorder (ASD).
|Chelsea (Buchman) Budde
’95 with Justus.
Budde, her husband, Pete, and their two children live in Waukesha, Wis. Following several years working in public relations, motherhood changed Budde’s path in life.
“It’s not in the best interest of my children to do a 9-to-5 job,” she says, “but I am definitely doing what I love. I think I have some knowledge, some calling in my life to work for kids with special needs, autism in particular. I felt selfish. I wanted to share what I’ve learned to help other children.”
Budde joined another mother, Denise Schamens of Brookfield, to form Good Friend Inc., a nonprofit organization dedicated to fostering awareness, acceptance and empathy toward children with autism.
“We started out by deciding that we really need to make a video about how to be friends with kids with autism,” says Budde. “It’s not fair to expect an 8-year-old second-grader to understand how to be friends with this unique child. We then thought, ‘Let’s really maximize this by developing a curriculum and a board of directors.’ It snowballed into the organization.”
Budde serves as president and, along with Schamens, facilitates Good Friend’s training programs. The organization offers peer sensitivity workshops at schools featuring grade-appropriate exercises and a screening of the 17-minute video. Each participant receives a certificate and an “I Am a Good Friend” bracelet. It also offers general assemblies for schools and in-services for staffs. This summer, the team will present at the Autism Society of America’s annual conference.
“Our focus is to reach elementary school kids before the social stigmas are developed,” says Budde. “We want them to be accepting and to make that a part of their environmental culture. We try to explain that the child with autism has a brain that works differently, so they understand certain behaviors. We also try to find kids with common interests. The child’s special interest may be dinosaurs, so who else likes dinosaurs?”
Good Friend, officially launched in 2007, is funded through donations and is looking for more supporters, says Budde. Information on the organization, its programs, on ordering the DVD and providing support is available online at
“I call it a God thing, how it all came together like it was supposed to,” says Budde. “We are living and breathing this in our lives and we would be negligent if we didn’t share this. We know in our hearts we are building a better world for our kids and others.”
Lobbying for early intervention
|Michelle (Hartmann) Puryear
’89 and daughter Claire.
Michelle (Hartmann) Puryear ’89 has sung the national anthem at Lambeau Field and performed with such artists as Reba McEntire and Brenda Lee, but her favorite audience is her daughter, Claire.
Puryear’s vocal and dance talents led her to make her home in “Music City,” Nashville, Tenn., where she and her husband, Matt, welcomed Claire into the world with a clean bill of health on June 14, 2006. Matt suspected early on that his daughter suffered from deafness. At 4½ months, she was diagnosed with sensorineural bilateral hearing loss.
“I wanted to find out what we can do for our daughter,” says Puryear. “When I began investigating, I discovered that babies born in Tennessee are not required by law to receive a hearing screening. Forty-three other states require screenings. Early intervention is the key to success.”
A month after diagnosis, Claire was fitted for hearing aids to keep her hearing pathways healthy. She received her first cochlear implant in June 2007 and a second implant four months later. The implants allow Claire to “hear in her own way,” says Puryear.
“She can’t pick out certain sounds because everything is the same volume,” she says. “It’s difficult for her in loud environments.
“Hearing loss is the No. 1 birth defect in our country,” she adds. “Thirty-three babies with hearing loss are born each day. There had to be a way to make newborn hearing screenings mandatory.”
Puryear started a grassroots effort, contacting state representatives to sponsor a bill in the state legislature. The first bill was defeated, but her work continued. She scheduled more meetings and shared Claire’s story with as many legislators as possible. On July 1, 2008, the bill was signed. A later amendment named it “Claire’s Law.”
Puryear continues to serve as an advocate for the deaf and hard of hearing and she has started an awareness campaign.
“Things happen to people in life and what you do is what makes a difference,” she says. “I could have been upset and not done anything, but I didn’t want anyone else to go through what we went through.”