Jennifer Schouest can't bear to let go of her infant son Robbie. Not to hand him off to her husband, Robert, to sleep, or to clean her suburban New Orleans home, or even tend to her 3-year-old daughter Samantha. The reason for her devotion is simple and horrific-each embrace may be the last. Diagnosed with Thanatophoric dysplasia, a rare genetic disorder that leaves children with severe physical deformities and underdeveloped lungs, Robbie is unlikely to reach his first birthday. "He's not fussy, but he's spoiled," says Schouest, 33, as she held her son. "I can't take my eyes off him."
At first, Jennifer and Robert, 40, a draftsman, struggled to care for their son and cope with their own lives. But six weeks after his birth, they got help. Alerted by the hospital where Robbie was cared for, volunteers from Angels' Place-a Greater New Orleans charity that aids the families of very sick kids-showed up at their door. The group's founder, Anita Gilford, and others now visit the Schouests several times a week, running errands, preparing meals and simply holding Robbie so that his parents can rest or do chores. "From the moment Miss Anita walked into our home, they have done nothing but help," Jennifer says. "It's nice to have someone here I can have an adult conversation with-someone I know cares about Robbie."
For Gilford, 58, sharing the burden is the whole point. "The hospital discharges them, and the parents go home worn-out and desperate," she says. "Any help we can give means so much." Stretching an annual budget of $140,000 funded by state grants and donations, Gilford, three staffers and 75 volunteers currently run car pools, make grocery runs and perform other services for 85 families in the New Orleans area. The support lasts as long as if s requested. And when a child dies, Angels' Place has even provided burial clothes and made funeral arrangements. "Anita is living the golden rule," says New Orleans philanthropist E.J. Ourso, who has just given her group $100,000. "She's helping others who cannot help themselves."
Gilford knows the hardships such parents face only too well. In 1993 the registered nurse noticed a small lump on the neck of her son Mark, then 11. Within days she and her husband, Marion, 58, a manager of a hospital laundry, sat in a doctor's office, learning he had been diagnosed with non-Hodgkin's lymphoma. "It was the most horrible day of our lives," Gilford recalls. "I promised God that if he would help my little boy, I would spend the rest of my life helping seriously or terminally ill kids." Over the next several months Mark under-went chemotherapy, and the family struggled to care for him and keep their lives in order. Then the lymphoma went into remission, and thanks to a children's charity, the Gilford's celebrated with a trip to Disneyland. "Mark was bald and weak, but it was the best Christmas we ever had," Gilford says.
Now 22 and a senior at Louisiana State University, Mark has remained cancer-free. But his mother was unable to forget her promise. For the next three years after his recovery, Gilford worked at hospices while earning a master's degree in nursing and taking business courses at night. In 1996 she launched Angels' Place in her Kenner, La., home, with help from a $1,500 gift from her father. Her first clients were the family of 13-year-old Brice Haydel, an 8-year-old with a brain tumor, whose mother had died a year earlier, leaving his father, Pat, to care for three children. "When Angels' Place came to us, it was a miracle," says Pat Haydel, a pipe fitter. "They helped me with food, gifts, just the caring that a family needs."
In the years since, Gilford, who now runs the group from a Metairie, La., office, has helped more than 100 families. Next she hopes to build a house for sick kids. "I want it to be a special caring place, like a Grandma's house," she says. In the meantime she intends to keep helping parents like the Schouests. "I see the face of God in each child," she says. "And once the mother or father sees I love the child, they just open up like flowers in the sun."
Bob Meadows. Alice Jackson in New Orleans
On Newsstands Now
- Amy Robach: 'I'm Lucky to Be Alive'
- Paul Walker: Inside His Tragic Death
- Julia Roberts: Choosing Family Over Hollywood
Pick up your copy on newsstands
Click here for instant access to the Digital Magazine