A year after getting help, Napa family counting its blessings

Watching 3-year-old Xavier Pequeño race around the house in a pair of Minions socks, one would never guess that he spent last Christmas in hospital isolation following a bone marrow transplant made necessary by a rare and deadly immunodeficiency condition.

“I’m so fast!” he yelled as he zoomed across the living room of his family’s Napa home on Monday, drawing a peal of laughter from his mother, Jessica.

This time last year, things looked very different for the family.

The flurry of difficulties began in October 2014, when Xavier was diagnosed with IKBA ectodermal dysplasia. The condition is known to have affected just a handful of children worldwide — and only one has survived into teenage years.

When the Pequeño family was featured in The Chronicle’s Season of Sharing series last winter, Xavier’s family was packing for an expected four- to six-month hospital stay after his operation.

“He had never been to the hospital before. He was sick way less than my other kids. It was a complete surprise,” his mother said, looking back to a year ago.

Before Xavier’s illness, Jessica had worked in marketing for a wine company and her husband, Higinio, worked as an interior design installer. They were a dual-income household with three healthy kids and money in savings.

That changed quickly, when Higinio was forced to go on disability after injuring a knee. He had surgery in November.

With Mom managing Xavier’s health care full time and Dad unable to work, the family moved into a smaller home with Jessica’s mother, both for the support and lower rent. But even then, they struggled to stay afloat.

“It felt like someone picked up my life and threw it at my head,” Jessica recalled.

Money from the Season of Sharing fund helped them to cover their rent for several months while they got back on their feet.

In December, Xavier had his transplant, with big brother Higinio Jr. as the donor. The operation went better than expected, and Xavier went home just seven weeks after surgery.

Today, Jessica said, she tries to share her story so people can understand how easily life’s circumstances can become complicated.

For the most part, Xavier gets to be a regular kid again. He plays with his dogs, Einstein, Tommy and Luna. He likes to practice baseball in the house, reproaching his mother when she doesn’t throw underhand.

“Hey, come back here!” he yells at his plastic ball as it rolls away.

His parents once thought he might never be able to play with other kids, but these days he lights up at the mention of his friends.

Now, the family is looking for a house of their own — hopefully with a yard where the kids and the dogs can play. Their credit is not as good as it once was, but they hope someone will take a chance on them.

Xavier is in preschool, and his mom goes to school now, too. She began taking classes at Napa Junior College last spring, and hopes to become a nurse or medical social worker, helping parents learn to advocate for their children.

“I had to learn to be his voice. No one teaches you how to do that,” she said. “I want to help other parents so they’re not as lost as I was when this started.”

The family’s luck has changed for the better, but worry lingers, along with the uncomfortable knowledge of how quickly a seemingly stable life can fall apart.

Xavier’s brother, Higinio, has been in therapy to deal with the emotional aftermath of his brother’s operation. And Jessica knows she will need to find a job with great health insurance, because when she returns to work her income will make the family ineligible for much of the assistance they currently receive. She worries about her husband, her widowed mother, her children.

“These things stick in my mind every day,” she said.

But the family is grateful for experiences many people hardly notice, especially at this time of year.

“My big kids are just excited we all get to be together this year,” Jessica said. “We rode the Santa train with Xavier. All the firsts that people take for granted, we get to do them now, and it’s so different.”

Watching Xavier begin to grow up has been a source of joy, all the same, she said.

“You’re a lot of work,” Jessica told him with mock sternness as they sat on the floor, playing with a Captain America action figure.

“Thank you!” he chirped back, smiling.

This story was written by Filipa Ioannou, a Hearst Fellow with the San Francisco Chronicle. You can follow her on Twitter: @obioannoukenobi.

The original article can be found here.