Emily looks like any other 3-month-old baby. She kicks and smiles when she sees her mommy. She's vulnerable, but much more so than other children.
Emily was born with no immune system. Within hours of being infected with bacteria or a virus, Emily's life is in peril. She is what is called a "bubble baby."
The common conception is that those born with severe combined immune deficiency are isolated in sterile settings, even a plastic bubble, for the rest of their lives. Only recently have doctors determined that SCID babies thrive better being touched.
For Jill and Matt Heaps of Lehi, the past few months have turned their lives upside down.
"We don't even get to see each other," Matt Heaps said looking at his wife, waiting for the doctor. When not working, Matt Heaps relieves his wife at the Ronald McDonald House in Salt Lake City while she travels to Utah County to tend to their other two children. Emily must be kept close to Primary Children's Medical Center in case she gets sick.
For the first few months of her fragile life, Emily has rarely seen a smile. She has been approached by people dressed in gowns, gloves and masks.
"I kept pulling down my mask, saying 'See? This is a smile,' " her mother said.
Doctors at Primary Children's Medical Center say they only see two to three such cases in a year. The condition is genetic.
"They've told us that us two being married is one-in-a-million chance and that we have a one-in-four chance of having a child with this," Jill Heaps said.
The young couple are hoping that a bone marrow transplant in March will help. Emily's 6-year-old sister, Jacqueline, donated some of her bone marrow to give her baby sister an immune system.
"They went in and they poked holes in each side of her hips, about 40 holes in the bone," her mother said, adding Jacqueline said she would do it again to help her baby sister. The transplant has built up Emily's immune system to the point where gloves, masks and gowns are no longer needed, but there are signs that her body is rejecting the transplanted marrow.
"She may not live in a plastic bubble, but we can't take her anywhere," said Matt Heaps. "In a sense, we all live in a bubble, an invisible bubble."
The couple can't think of the last time they went anywhere in public, besides the hospital. Everything Emily comes in contact with must be sterilized.
It was when Emily was 2 weeks old that Jill noticed something was wrong. "She was just a really fussy baby," she said. Soon ear infections set in as well as pneumonia. It was her mother's antibodies, received through the placenta, that saw Emily through the first few weeks. In most babies, their own immune system begins to kick in, but Emily had none.
The family's situation soon caught the attention, and hearts, of their friends and neighbors.
Megan Gazaway, a friend of the family, quit her job as a nanny to watch the couple's two children at home full time. She said she thought it was the least she could do.
"Not only do they have to pay for their mortgage, they have to pay $800 a month to live in the Ronald McDonald House," Gazaway said.
That's just the tip of the financial iceberg. As a computer programmer, Matt's health insurance has so far covered the medical costs, including the $200,000 transplant, but the coverage has a $1 million cap.
Jill said each day brings them closer to that cap.
Financial worries prompted Gazaway to hatch the idea of a fund-raiser. Soon word got out that one of the largest garage sales Orem has ever seen would be held at Jill's parents' house this Friday and Saturday.
"It's just amazing the outpouring of support from people who we didn't even know," Gazaway said. Washers, dryers, computers and other top-quality "gently" used items have poured in.
Gazaway said the sale is being held at 124 S. 400 East, across from Orem High School, today beginning at 8 a.m. and continuing Saturday at the same time.
Gazaway said the garage sale is more about the gesture of support that anything else, knowing the proceeds will but put a dent into the medical bills.
Meanwhile Jill and Matt Heaps will nervously await blood test results, which will tell them if the transplant will work. "They said it would be 50-50," Jill said. If not, doctors will have to do a second transplant.
E-MAIL: gfattah@desnews.com