As teen battles disease, family members lean on each other

Mary Kate Meade, front, poses with her parents, Carol and Russ Meade, middle row. They received the Arc of Southeast Iowa’s Family of the Year Award May 10 at Redeemer Lutheran Church in Iowa City. In back are Sheba Francis, senior vice president and program director of the Arc of Southeast Iowa, and Bill Reagan, president and CEO.

By Celine Klosterman

TIFFIN — For the family of Russ, Carol and Mary Kate Meade, community support makes all the difference.

The Catholics said demonstrations of caring from family, St. Peter Parish in Cosgrove and the Arc of Southeast Iowa — which serves people with disabilities — have encouraged the Meades for years as Mary Kate, 14, has dealt with brittle bone disease.

“What really helps us is people being there, especially when we need it the most,” Russ said. “For Mary Kate, that’s one area where the Arc has really been supportive.” Arc representatives, usually college students, have become part of the Meades’ extended family, Carol said.


On May 10, the Arc of Southeast Iowa recognized the Meades with its award for “Family of the Year.” They exemplify the kind of love and family support that drives the Arc, said Bill Reagan, president and CEO of the Arc of Southeast Iowa. “If you meet them, you immediately feel their warmth and see how special they are.”

The Meades’ connectedness is what has kept them going since Mary Kate was born with osteogenesis imperfecta, also known as brittle bone disease, a hereditary condition that leaves a person with fragile bones.

Russ and Carol first noticed symptoms when their daughter broke her femur at about 9 months old, then broke the same leg again within months. Carol and a few of the Meades’ nieces and nephews have milder forms of brittle bone disease, but she said she and Russ were nonetheless shocked to discover Mary Kate’s severe condition.

“She’d roll over in her crib and break her legs,” Carol said.

Russ estimated Mary Kate has suffered nearly 40 fractures — almost all of which occurred in her femurs, but also in two collarbones and both of her tibias and fibulas. Her legs broke so frequently as a child, she was using leg braces and a walker by age 3. Later she switched to a wheelchair, which she still uses.

But over the past seven years, her condition has improved. Around 2004, she started going to the Children’s Hospital & Medical Center in Omaha a few times a year for intravenous treatments involving bisphosphonates, drugs that prevent loss of bone mass. Though her leg bones still aren’t strong enough to bear weight, it now takes an impact to break one of her bones.

Mary Kate notes she can go swimming and has even ridden roller coasters without injury at Disney World. The eighth-grader played a beautician in Clear Creek Amana Middle School’s December production of “The Wizard of Oz,” and, using just her arms and upper body, she tried out for the high school’s dance team.

She said dealing with her disease “is sometimes hard, but you have to focus on the positive.”

“We depend on each other a lot,” Carol said of her family members. “Something like this really makes you pull together.”

Bill noted that Russ, a certified public accountant, makes appointments with clients no more than 30 minutes from his home office so he’ll be in the area if Mary Kate needs him. When Russ visits Des Moines for continuing education courses, she and Carol accompany him.

“We know God is with us, too,” Carol said. The Meades are on prayer lists throughout the country.

At St. Peter’s, the entire family participates in music ministry; Mary Kate has served as a cantor and lector. A few years ago the parish installed a wheelchair ramp that accommodates Mary Kate, who wanted to be an altar server, and a parishioner who uses a wheelchair and serves as a eucharistic minister.

The Meades “are an example to everybody,” said Father Ed Dunn, St. Peter’s administrator. “Everyone in the parish admires the family’s untiring care and love for Mary Kate, and their desire to let her participate in as many activities as possible.”

Mary Kate may soon be able to learn to drive, the family hopes. “We have to figure out the mechanics of the vehicle,” Russ noted.

For his daughter, the first step will be moving from her wheelchair to a stationary chair. “Every step makes a big difference,” he said.

Perspective makes an impact, too. “You have to keep living life,” Russ said. “We have to be thankful for each day we have.”

Catholics honored at ceremony

In addition to the Meade family, numerous other Catholics were among those recognized during the Arc of Southeast Iowa’s 54th annual awards ceremony May 10 in Iowa City.

According to Bill Reagan, president and CEO of the Arc of Southeast Iowa, those Catholics were: Doug Alberhasky and Terrence Neuzil, Arc Community Hero Awards; Ed and Laurie Finn, Arc Outstanding Parent Collaborator Award; Emily Finn, Arc Angel Award; Margaret and Chuck Felling, Arc Ruth Becker Award; Patricia Rodriguez, Arc Cross Cultural Excellence Award; Pamela-Quintero Rodriguez, Arc Sammy Kuntz Award; Tim Sullivan, Jack Ruth, Roger Reilly and Ryan O’Leary, Arc Community Service Awards; and Father Rudolph Juarez, Arc Human Rights Award.

The human rights award recognizes significant contributions to the community in advocating for inclusion, dignity and full community participation for all people.

Fr. Juarez, pastor of St. Patrick Parish in Iowa City, said that more important than awards is “that we do our level best to be more compassionate and inclusive in our thinking and acting.” He said he is motivated by the Gospel call to “use our time, talent and treasure to build up the Kingdom and respond in generosity to God for all he has given us. This is especially true in regard to inviting everyone to the table in our country and in our Church, so that everyone can contribute to the common good regardless of their legal status.”

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