Home away from home
For many families with sick children, a Ronald McDonald House is a home away from home.
That’s certainly what it was for local residents, Amy and Jon Casavant.
The Casavant’s son, Pierce, was born May 14, 2008, with a condition called arthrogryposis which is a rare congenital disorder that is characterized by multiple joint contractures or shortening and can include muscle weakness and fibrosis. He was born with club feet and his wrists, along with his two middle fingers, were flexed. He also developed swallowing and breathing problems due to how the condition affects the growth and development of his jaw. He underwent a tracheotomy in June because of severe sleep apnea due to airway obstruction associated with his jaw.
Pierce has undergone three surgeries on his feet to straighten them out, the first was at six months of age. He is scheduled for another after the holidays.
During Pierce’s surgeries and treatment, the Casavants stayed at the Ronald McDonald House just two blocks away from the University of Minnesota Children’s Hospital in Minneapolis.
They stayed for an extended period of three weeks this past summer. They also stay there when Pierce has periodic checkups, depending on availability of space. The Twin Cities House includes four buildings with 48 rooms. There are private rooms, several living rooms, a large kitchen, a gymnasium, play areas for children, a small movie theater, a workout center and laundry facilities.
There is one meal a day provided by volunteers from the community who come in to cook for the families. Families can also buy groceries to cook their own meals. They also have photographers who come in to take family photos. There are hair dressers who will come right to the House. Community members and companies donate concert tickets and Minnesota Twins tickets for families.
“The place is phenomenal,” Amy said. “You couldn’t ask for better hospitality. To have that peace of mind and a place to call home while you’re dealing with a sick child is a real blessing. It’s a place where you can go to have a sense of normalcy. You could do laundry or vacuum just to take your mind off things.”
The Casavants also had their two daughters, Lauren, age 6, and Marli, age 3, stay with them. While there, the girls were able to take part in field trips organized by the Ronald McDonald House staff. These trips included outings to the Mall of America, strawberry picking, bowling, mini-golf and swimming.
Amy said it was important to them to have the whole family together, and not having to worry about taking care of the girls while they were with Pierce at the hospital was terrific. Plus, the girls really enjoyed their time at the House.
“They call it their summer camp,” she joked. “They’d go back in a heartbeat. They had such a great time.”
Emotional support
Besides providing accommodations for the family and taking care of the couple’s other children, the House also provided tremendous emotional support.
Because the University of Minnesota Children’s Hospital is the only facility that offers treatment for many rare children’s diseases and ailments, people from all across the country are there with their families. Amy said they formed many friendships and drew knowledge and strength from the experiences of others.
“Every person staying there at the house also has a sick child so you form amazing bonds with strangers,” Amy explained. “When you come home to your own community you’re the only one with a sick child, but there you have so much in common with the other families. Everybody is going through what you’re going through. It’s a great support system.”
For now, doctors say Pierce’s jaw is growing and progressing to the point where he will likely outgrow the issues with that by age two. His foot issues will be lifelong. He is not able to bear weight on his feet, but he will walk someday, hopefully soon. Doctors are taking the “wait and see” approach on his hands as they grow and develop.
Amy said she and her husband, Jon, have learned so much in caring for Pierce over the past 18 months. Amy’s professional background as a occupational therapist has certainly come in to play.
Amy said they have never gotten a bill for their stay at the House because Pierce’s medical insurance picked up the tab. She’s never really compared what it might have cost the family to stay in a hotel, but she knows one of the hotels near the hospital charges upwards of $100 a night. The family is certainly thankful they haven’t had to worry about that financial burdon in addition to all the concerns about Pierce’s health and well being.
Portions of the annual operating costs for Ronald McDonald Houses are funded by McDonald’s restaurants. The remainder of the income comes from individual and corporate donors. There are many ways people can support the Houses through monetary donations which can be made through the charity’s website at rmhc.org.
The Minneapolis/St. Paul Ronald McDonald House established the pop tab collection recycling program in 1987. Since then, participating Houses have raised millions.
Three-year-old Marli has decided to spearhead her own local fundraising drive for the House. She and Lauren are in charge of collecting pop tops to be donated to the Ronald McDonald House Charity. Donations are always welcome.
How RMH go it’s start
When Philadelphia Eagles tight end Fred Hill’s 3-year-old daughter, Kim, was being treated for leukemia in 1974, he and his wife Fran, camped out on hospital benched and sat in cramped waiting rooms. During Kim’s three years of treatment the Hills watched other families of seriously ill children do the same thing. Many of the families travel from long distances and couldn’t afford hotel rooms.
The Hills looked for a solution. Fred rallied the support of his teammates to raise funds. Through Jim Murray, the Eagles’ general manager, the team offered its support to Dr. Audrey Evans, head of the pediatric oncology unit at Children’s Hospital of Philadelphia. Evans dreamed of a comfortable temporary residence for families of children being treated at her hospital. Jim also enlisted advice from the local McDonald’s advertising agency, who helped launch the St. Patrick’s Day Green Milkshake promotion. Funds raised helped buy an old house located near the hospital, which was opened in 1974 as the first Ronald McDonald House.
Since then, the Houses have been built world wide. In 2010, the charity is scheduled to open their 300th Ronald McDonald House.common with the other families. Everybody is going through what you’re going through. It’s a great support system.”
Pierce’s future
For now, doctors say Pierce’s jaw is growing and progressing to the point where he will likely outgrow the issues with that by age two. His foot issues will be lifelong. He is not able to bear weight on his feet, but he will walk someday, hopefully soon. Doctors are taking the “wait and see” approach on his hands as they grow and develop.
Amy said she and her husband, Jon, have learned so much in caring for Pierce over the past 18 months. Amy’s professional background as a occupational therapist has certainly come into play.
Funding for the RMH
Portions of the annual operating costs for Ronald McDonald Houses are funded by McDonald’s restaurants. The remainder of the income comes from donations. Monetary donations can be made through the charity’s website at rmhc.org.
The Minneapolis/St. Paul Ronald McDonald House established the pop tab collection recycling program in 1987. Since then, participating Houses have raised millions of dollars.