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``Whatever happens to Josh for the better or worse, you have all helped create a legacy within our family,'' parents Ed and Anmarie MacNevin wrote in a thank you letter posted on the Web site.

Josh was fussy from his early days. He had rosy cheeks -- too rosy. He was smaller than his twin brother, Jacob, vomited frequently and was irritable.

On June 2, he woke from a nap blue and lethargic. Doctors found fluid in his lungs and diagnosed him with pneumonia. Three days later, he swelled so much he couldn't open his eyes. The family was referred to cardiologists, who diagnosed Josh with restrictive cardiomyopathy.

Within days, Josh was put on the heart-transplant waiting list. His rank on the list changed daily as other children passed away, received transplants or came on with more serious conditions.

While the infant spent his days at the UCLA Medical Center, far from the family's Lake Forest home, watching ``The Wiggles,'' or playing on his favorite rocking horse, the MacNevin family life turned into a surreal race.

Relatives and friends took turns by Josh's side at the hospital while the MacNevins attempted to keep up with their two other children's needs. The family's phones ring all day long for updates on Josh's condition, and Anmarie's wallet became a Rolodex of Children's Hospital of Orange County and UCLA doctors.

On Monday, as Anmarie sat by Josh's bed, one of the cardiologists on rotation came into the room. She raised her head and recognized Tim Casarev, a childhood friend from her neighborhood.

``Small world,'' she said.

The long-awaited call came Tuesday at 2:15 a.m. A social worker told the family that a donor had been found.

``It made it real,'' Anmarie said. ``I didn't know if I should cry or scream or jump up and down. I wanted to call everybody I know but it was too early.''

Josh's saving heart would come from the death of another 18-month-old boy from California.

``It's a blessing that it's another boy his age,'' Anmarie said. ``We're so thankful.''

Tuesday morning, as Anmarie carried Josh down to the operating room, he waved to everyone passing by -- a gesture that became his trademark at the hospital.

Josh was out of the operating room Tuesday afternoon, and doctors told the family that everything went well.

If his body accepts the new heart and all goes well, he will spend the next year returning to UCLA Medical Center for weekly tests and monthly biopsies. He will take 10 to 15 medications a day. He will never be as fast as other children but will be able to live a fairly normal life -- although he may need another transplant in eight to 10 years, and won't be eligible for a third transplant should he need it later.

For all their joy, the MacNevins recognized that their good news came with a degree of sadness. Another child needed to die in order to save Josh. Another family's loss turned into the MacNevins' blessing. They prayed every night that Josh would get a heart -- but also prayed for the family that had to give up that heart.

Social workers purposely don't reveal much about the donor's life, to allow the family to grieve. Anmarie said she plans to write a letter to the donor's family, which will be delivered through social workers. The family will choose whether they want to respond.

``I think it would help give them closure,'' she said.

Since the beginning of the experience, the MacNevins have met with overwhelming support from family, friends from church and total strangers. The outpouring ranges from messages on the family Web site to assistance with household chores and collections of donated money.

Ed MacNevin started the Web site, where he updates family and friends on Josh's condition, as a therapeutic outlet allowing him to deal with his son's condition.

``I need something to focus on, to feel like I'm helping Josh,'' he said.

The site took on a life of its own. Friends saw the MacNevins overwhelmed by phone calls of help, so they set up pages to schedule meals and errands for the family. They post pictures of Josh and the family. They added links to resources to learn about cardiomyopathy. They heard from survivors' families that gave advice about what to expect as Josh recovers.

When the ordeal is over, Ed plans to turn the site's content into a book for Josh and the family. He will donate the Web site for parents who are going through the same experience.

And support has come in real life, too.

A fund-raiser organized at Outback Steakhouse in the Foothill Ranch area of Lake Forest on July 15 drew 578 people. Old friends from school who had not kept in touch for years called to offer help with household chores.

The MacNevins believe that things happen for a reason.

``It's hard to understand why God puts us through things like this, but we know there's a reason,'' Anmarie said.

So after learning that donated organs from one child can save the lives of up to seven others, the MacNevins decided to do everything they can to make Josh a poster boy for becoming an organ donor.

``This really changed our perspective on life,'' Anmarie said.

CONTACT THE WRITER: (949) 454-7377 or mliszewska@ocregister.com