‘Meant to Be Brought Together’

Judy Ramirez understands the urgency. Last year, her son Paul was diagnosed with a rare form of cancer and was given six months to live. So when Ramirez saw a newspaper article about a yard sale fund-raiser for 6-year-old Dylan Chavarin, she didn’t send a card.

Instead, she drove from her home in La Verne and visited Dylan’s mother in Azusa to suggest a way to raise money for his medical needs and offer support for what she knew would be a trying time ahead.

The two mothers had never met, yet found themselves on opposite ends of the same situation. Krissi Chavarin, 30, was just beginning the fight to save her son, who desperately needs a liver transplant; Ramirez, 40, was just ending the fight that saved hers.

“We were meant to be brought together,” Ramirez told Chavarin when they first met. “I was meant to share my experience with you as a mother.”

Ramirez remembers the difficult medical treatments her own son received. She remembers the long hours with doctors.

“The fellowship we share is a fighting bond,” said Chavarin. “It’s a mother’s instinct to fight for their children. When she comes over, there are no facades. It’s just like old friends.”

Out of their connection has come the Bear Hugs for Dylan campaign, a fund-raising effort that is selling teddy bears for $17 apiece. The goal is to raise $100,000 for the boy’s medical needs.

Dylan has a rare form of Hirschsprung’s disease, an inherited condition that impairs intestinal function and prevents the body’s absorption of nutrients. Although in most victims the intestinal system can be surgically repaired, this was not an option for Dylan because he has complete intestinal failure.

The disease affects about one in every 5,000 newborns in the United States. However, the American Pseudo-obstruction and Hirschsprung’s Disease Society Inc., which promotes public awareness of such conditions, describes acute cases such as Dylan’s as “very unusual.”

“His condition is extremely rare,” says Dr. Dan W. Thomas, head of pediatric gastroenterology and nutrition at Childrens Hospital Los Angeles. He has treated Dylan since infancy and says it is only the third such case he’s seen in the 25 years he’s been with the hospital.

Dylan has survived 12 surgeries and more than 40 hospital admissions. At home, he is nourished intravenously for 12 hours each night through a tube that runs from a small pump to a surgically created port in his chest.

Unfortunately, the life-sustaining medicine in the tube produces a side effect: cirrhosis of the liver. He must now undergo two or three blood transfusions a week.

“He’s not going to make it if he doesn’t get [the liver and small intestine transplant]” said Thomas, who is also an associate professor at the Keck School of Medicine at USC. “We just want to see him through this. He’s a great kid.”

Unlike other boys his age, Dylan can’t play football. He can’t skate. And if he were to take a fall in the park and cut himself severely, he could bleed to death. His hands and feet often become numb. He’s bloated from the fluids he retains. His skin is yellow from jaundice.

During playtime at school, other kids ask, “Why are you yellow? Do you have on makeup?’ Sometimes he explains. Sometimes he walks away. His mother tells him to say, “I’m sick. I need a liver.”

How soon he may get a liver and bowel is unknown, but he is on the waiting list at the Lied Transplant Center in Omaha.

“It’s just waiting,” says Chavarin. “A little boy we know from our hospital waited 13 months. But unfortunately, we don’t think Dylan will be able to wait that long.”

Dylan’s expenses have placed enormous stress on the family. His father, Jorge, estimates that over the years, care for Dylan has totaled nearly $6 million. Insurance has covered most of that, and the family also has received financial assistance from California Children Services. But Jorge estimates the family, which includes two other children, has spent about $15,000 on Dylan’s care.

When the call for the transplant comes, they will move to Nebraska to be near the transplant center where Dylan will complete his outpatient care for at least six months.

To care for Dylan, Chavarin has cut her work hours as a bank teller to one day a week for the last four years. The family’s financial survival has depended on the $2,600 her husband earns each month as a Marine Corps staff sergeant. But he is based at Camp Miramar in San Diego, more than two hours’ drive from Azusa. He can get home just twice a week.

The Bear Hugs for Dylan campaign grew out of a chance meeting Ramirez had shortly before attending the yard sale Oct. 2.

Ramirez was accompanying her mother, who as an Avon representative in Duarte had to pick up an order from the district office. While there, district sales manager Saajida Polk asked Ramirez about her son. As she relayed the good news about his remission, Ramirez also mentioned Dylan.

Without any hesitation, Polk said, “Let’s do a fund-raiser for him,” recalled Ramirez.

Ramirez then went to the yard sale and proposed a major campaign to help. Chavarin thought the idea was great, but wondered why Ramirez, then a stranger, would go out of her way like that.

Ramirez explained: “We just had a blessing in our family, and there have been people who have reached out to us who didn’t know us, and now I just think it’s time for us to start reaching out to other people.”

Ramirez knows the importance of receiving support. Like Chavarin, she did everything to solicit help from car washes and bake sales to golf tournaments and teas. She did anything to get Paul to New York for the cancer treatment which, ultimately, saved his life.

“What Judy offers Krissi is hope,” says Polk. “It’s not even about the bears; it’s about the sharing. They share the fear. They share the agony.”

Ramirez’s son Paul, now 21, knows what lies ahead. “The parents have to set it in their minds that everything will be OK. God’s going to take care of it . . . I actually told God I wasn’t ready to die yet. And I’m sure his parents are not ready to lose him either.”

To buy a teddy bear in support of Dylan, contact Saajida Polk at (626) 357-9234 or Judy Ramirez at (909) 305-0898. Donations should be payable to C.O.T.A. for Dylan (Children’s Organ Transplant Association) and mailed to: Dylan Chavarin, C/O Transplant Fund, P.O. Box 3056, Covina, CA. 91722.