Family unites to care for child - East Valley Tribune: Get Out

Family unites to care for child

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Posted: Tuesday, June 17, 2003 9:43 am | Updated: 1:55 pm, Thu Oct 6, 2011.

At an east Mesa softball field, the golden sun is setting as the Lucero family gathers to watch a game.

Laura, 11, is playing. Michelle, 36, Dominique, 16, and Alyssa, 13, pull up folding chairs in front of the aluminum bleachers, bottled water in hand.

Michelle, the mom, and Dominique take turns passing 2-year-old Priscilla between them.

Unable to walk on her own, Priscilla is carried or pushed in a stroller everywhere.

"Come keep me warm," Dominique says to her youngest sister, arms outstretched.

Twenty minutes later, Ray, 36, Priscilla’s father, arrives from his construction engineering job. His boyish face lights up when he sees his family.

Priscilla’s face explodes into a smile. Her brown eyes light up, her cheeks seem to dimple in a thousand places.

She does not speak, squeal or cry out. Her baby-soft arms wiggle with glee.

Then, in a coyness she often displays, Priscilla reaches for her father, then retreats shyly, only to throw her arms open for him seconds later, when he swoops her up and plants a kiss on her cheek.

TWO YEARS OF UNCERTAINTY

Shortly after Priscilla was born, it was clear something was wrong. Her facial features resembled those of a baby born with Down syndrome.

A geneticist was called, and thus began a parade of blood tests, infections, hospitalizations, breathing tubes and doctors.

"Her whole first year was nothing but blood tests," Michelle said.

Almost two years later, Priscilla was diagnosed with Costello syndrome, a rare disease believed to be genetic. It is diagnosed by a collection of symptoms, including large ears, deformed hands and an underdeveloped digestive system, which can cause problems swallowing and going to the bathroom. Priscilla cannot speak; she communicates through about a dozen specific gestures.

The 150 known victims of Costello syndrome worldwide are often physically strong, have ornery dispositions and playful, affable personalities. The oldest known survivor is in his 30s.

Michelle, who was the primary earner in the family with a real estate sales job, stays home with the baby, who needs to be watched constantly, as she often vomits. She does not eat solid food.

The Luceros are hosting a fund-raiser Sunday in Tempe so the six of them can travel to Baltimore for a conference on Costello syndrome. The family hopes to learn more about Priscilla’s disease and network with other parents. Ray and Michelle hope the older girls can learn more about Costello syndrome so they can care for their younger sister in case something happens to their parents.

DREAMS FOR PRISCILLA

Every member of the Lucero family — except Priscilla — plays on a softball team. On Monday nights, it’s Ray and Michelle’s turn. These are the nights when the older girls stay home and care for their baby sister.

Priscilla is usually content to watch videos. "Monsters, Inc." and "Lilo and Stitch" are her favorites.

Priscilla is an avid roller. She often log-rolls to the corner of the family room to tear apart a pile of toys.

As is usually the case with the oldest child, Dominique is mostly responsible for caring for her younger siblings. A pretty girl with shiny black hair, Dominique often talks about softball scholarships to college and friends who are boys. She said she is sometimes surprised at the freedom her parents give her. Her father sometimes bends his rules about getting car rides from boys he hasn’t met, for example, because he and Michelle trust her judgment.

"It bugged me at first that I had to stay home all the time," she said.

But when it came to caring for Priscilla — who would often yank her breathing tube out of her mouth — Dominique was more scared than annoyed.

Things are different today.

Even though the girls run to Priscilla when they hear her cough because she’s probably about to vomit, they see their time with her as a treat. Alyssa makes countless trips around the family room, holding Priscilla’s arms above her head as the little girl adamantly marches forward.

"I love staying home with her now — now that she’s developed a personality," Dominique said. "She is very, very flirtatious."

Dominique and Alyssa giggle as they talk about how Priscilla grins and waves at the young, cute bank teller. Once, when the family was at a clothing store, a goodlooking sales clerk walked past Priscilla’s stroller. She nearly fell out of it as she twisted around to watch him pass.

Dominique thought she wanted to be a lawyer. But after learning about and loving her youngest sister, she’s decided she’d rather be a physical therapist.

"I know my parents won’t be around forever, and I’ll probably have to take care of her," she said. "If I have to, I’ll change my major to take care of her."

Dominique has a confident outlook for her youngest sister.

"I know she’ll be slow. When she’s 5, she’s not going to be in kindergarten right away, maybe she’ll have the mentality of a 3-year-old," Dominique said. "She’ll be behind, but not very far behind.

"I want her to grow up and think she can play softball even if she has to play on a different team. I don’t want her to have crushed dreams. We all grew up playing softball."

A NEW MEMBER OF THE TEAM

Three weeks ago, Michelle, unexpectedly, learned she was pregnant. The family assumed it will be another girl, and has named her Janelle.

At first, Dominique was shocked. Now she’s excited.

"I was kind of like, we don’t need another baby. I thought I’d have to be home more often," she said. "Now the other girls are older and can help.

"Maybe it will help Priscilla do a lot of things. She can see the baby do things and catch on."

Benefit dance

What: A benefit dance for Priscilla Lucero, a 2-year-old Mesa girl who has Costello syndrome

When: 3 p.m. Sunday

Where: Cervantes Restaurant, 3818 S. Mill Ave., Tempe

Cost: $10 Information:

(602) 955-3730 Donations can be made at Tempe Schools Credit Union "Benefit of Priscilla Lucero" account No. 47496.

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