Parents get comfort, support from PROP
The words that went through Lorena Freund’s mind were, “I can handle anything except death.”
Little did she know that she was about to find out that her infant daughter, Molly, was going to be diagnosed with a neurological disease called I-cell or Mucolipidosis Type II, and that death from pneumonia or congestive heart failure usually occurs within the first decade of life.
Doctors told her that I-cell disease is a rare disorder that has no ethnic predilection. Although there is very little data available, according to WebMD.com, recent studies report a frequency of approximately one in 640,000 live births.
Developmental delay and growth failure are common presentations of I-cell disease. At 5 years old, Molly weighed only 20 pounds, about the same weight of a normal 18-month-old, and wore size 2 clothing. Only her head circumference was normal for her age.
After seeing different medical specialists, Freund says, “We quit shopping and started to enjoy our time with her. We feel blessed that we got to have Molly for five years,” Freund says. “She touched our lives in so many ways.”
While Molly was alive, Freund inquired about support groups for parents of children with special needs and quickly found there were none.
In 1984, Freund and four parents started Parents Reaching Out To Parents, a support group for parents with children or adults with developmental disabilities.
In 1986, PROP was organized as a nonprofit organization, and Freund became its volunteer executive director. Group membership grew substantially.
PROP meets every Wednesday from 12:30 to 2:30 p.m. at Lake City Community Church, across the street from Lake City High School.
In any given week, 25 to 27 parents attend the luncheon meeting with an average of 100 people attending per month. There is no fee, and lunch and child care are provided.
The group consists of young and old men and women, foster and adoptive parents living and working in the community, who come from every walk of life. They all have one common bond – they care for a child with special needs.
“This is a time of safety and comfort for parents,” says Freund. “Parents share, cry and laugh and bond.”
The PROP meeting offers a two-hour break from the day-to-day demands of caring for a special-needs child.
“Depression doubles in families dealing with rare diseases, death and various disabilities,” Freund says. “We all care about each other because we have all walked the mile, and have had to learn to deal with frustration and the joys of special needs.”
When parents are in need, PROP has trained crisis staff to help parents or family through crisis/emergency situations.
“We try to help as much as we can,” says Freund. “Emergencies sometimes require help with transportation, utility bills and food.”
Freund is also responsible for fundraising, which she readily admits is a hard chore. The Hayden Lake Rotary Club and the Coeur d’Alene Kiwanis have been supportive of PROP over the years, but the group continues to need financial help.
Kathy Dalberg’s son, Phillip, is 22 and has cerebral palsy with seizure disorders and is mentally disabled. She has been involved with PROP as a parent and is currently serving as the volunteer secretary/treasurer of the board of directors.
“PROP is a wonderful emotional support group,” says Dalberg. “Parents learn so much from other parents.”
According to PROP participant Michelle McLuskie, whose daughter, Tierrah, has autism, PROP parents especially make a point of providing support and comfort for new moms and dads.
“I know what it is like, and I want to be there to help others as much as I can,” says McLuskie.
McLuskie says that Freund’s dedication over the years has been phenomenal. “Lorena is amazing – she always has a smile on her face.”
“This is my life, and I love it,” says Freund. “I never miss a Wednesday meeting because I love doing what I do.”