Support flows in for ailing toddler with rare disease

MECCA, Calif. — Up until a week ago, Reyna Melgar was living in a dilapidated trailer where dusty wind wafted through gaping cracks in the walls and where flies swarmed around her disabled 3-year-old son, who has a rare genetic disease.

Now she has moved into a furnished four-bedroom apartment provided by Riverside County, Calif., and the Coachella Valley Housing Coalition, and is receiving assistance from the non-profit group Angel View, as well as from dozens of people who have pitched in with food, medical supplies and other help.

The story of how Melgar is coping with the illness of her son, Josué Candelario, was featured a month ago in The (Palm Springs, Calif.) Desert Sun and USA TODAY, and has since sparked an outpouring of support for the boy and his family.

"Now I know that I'm not alone," Melgar said Tuesday, holding a hand on the boy's chest while he napped on a couch in the apartment.

Josué can no longer speak, sit up or stand. He has metachromatic leukodystrophy, or MLD, a disease that destroys the myelin covering that insulates nerves in the brain and nervous system. There is no known cure, and most children with the disease die by age 5.

Melgar said that Josué, after being hospitalized for several days with a high fever, is now doing much better in the new apartment and seems calmer.

"Here, he almost doesn't cry at all," she said with a smile. "I feel very happy about everything they're doing."

The disease has brought a heavy burden for Melgar, a 31-year-old farmworker who has stopped working to care for her son. Her husband was deported to Mexico two years ago, and her sister, Rosario, has continued farm work to support the family.

Those who have been visiting regularly to check on Melgar and her son include Monica Telles, a development specialist with the Riverside County Housing Authority. Telles and Angel View helped Melgar and her sister move into the apartment temporarily last week while a new mobile home is being built for them and their five children.

The new mobile home, which will be provided by the county, should arrive in about three weeks. A nurse also will begin coming to provide regular care for Josué at home.

"I can't say how relieved and proud I am of the work that we're all doing," Telles said. "Just to see Josué as calm as I have these last few days, in a safe and sanitary environment, is worthwhile. I can't even explain my emotions. It is awesome."

The family last week was moved out of the Oasis Mobile Home Park after a windstorm knocked over a palm tree that narrowly missed their trailer and damaged their car, rendering it unusable.

Angel View, which assists children with a range of disabilities, had just received a used car as a donation. Instead of selling that car, the organization took the unusual step of donating it to the family.

"We couldn't leave them without a way for him to get medical care," said Catherine Rips, director of Development for Angel View, which is also coordinating assistance for the family. "An amazing donor has stepped forward to cover the cost of the insurance."

People from around the country have contacted the group wanting to help. Calls have come from Colorado, Minnesota and New Jersey, among other places, Rips said. "It's really touched so many people."

She has heard from five people who lost children or relatives to MLD. One couple from Palm Desert, Calif., who lost two grandchildren to the disease has been collecting donations.

Offers of help also have come in other forms as people have dropped off donations of gauze pads, food and other items.

"We've received gift cards, monetary donations, clothes, diapers, nonperishable food items and more," Rips said. "It's been amazing, absolutely amazing."

Many of the more than two dozen people who have contacted Rips directly said they want to stay involved in making sure the family's needs are met. The family will continue to need help, ranging from the purchase of new tires and repairs for the car to additional medical supplies, household appliances, clothing and other items, Rips said.

Melgar said she is deeply grateful for the help. She initially was surprised when people arrived to bring her food, diapers and medical supplies.

Together, she said, those individual gestures "become a big help, and it's been a very great blessing in our lives."

At her old trailer, the family shared two bedrooms and had only cold water. Now they have a full kitchen, warm water, and a playground down the street.

She said many other farmworkers in the old trailer park yearn for the opportunity to live in such a place, and she feels fortunate.

Melgar said that even as Josué's progressive illness remains unchanged, she has noticed little improvements in the last few days. For one thing, he has been able to stretch out his right arm, and no longer holds it tensely at his shoulder.

Holding one of Josué's little hands, his mother stretched out the tense fingers, bringing dimples to his knuckles.

He is being fed through a tube, but when Melgar holds the boy upright, he gazes at his visitors with peaceful eyes. "I see that he's calm in this place," she said.

And for those who read about him in the newspaper and stepped forward to help, Melgar said she has a message: "Tell them thanks for everything they're doing."

How to help

People who are interested in helping Josué Candelario and his mother, Reyna Melgar, can e-mail Angel View at info@angelview.org.

The MLD Foundation, based in West Linn, Ore., has said it will provide a grant to the family through its MLD Family Compassion Fund. More information about the fund is available at http://MLDfoundation.org/fcf.html. The non-profit group can be reached by e-mail at compassion@MLDfoundation.org.