Rowe family struggles to make ends meet with child who suffers from debilitating disorder

Ana Maria Trujillo | The New Mexican

11/6/2009 - 11/7/09

It's not an easy life. Every day is a struggle for Rowe resident Jessica Gonzales and her family.

In June of 2006, Gonzales and her husband, Justin Ortega, were ready to give birth to a healthy baby girl. All the ultrasounds and checkups gave her reason to believe her little girl had no problems. Even after she was born, she appeared to be in perfect health. It wasn't until a checkup a few years ago that a doctor asked to run tests on Kaylee Ortega, now 3. The infant was diagnosed with DiGeorge Syndrome. According to the Mayo Clinic Web site, the syndrome is a defect in chromosome 22 that results in poor development.

Mayo Clinic said the problems that DiGeorge causes vary among those who have it, but because of her condition, Kaylee is unable to walk and talk; and she suffers from frequent seizures.

Kaylee also had a heart murmur for which she underwent surgery in April 2007 in California.

A day in the life

Kaylee sleeps in her parents' bedroom in a crib that's nearly falling apart. Gonzales likes to keep Kaylee close so she can hold her when she has seizures at night. After a disrupted night of sleep, Gonzales wakes up at 5:30, gets her two boys — Justin Ortega Jr., 10; and Fares Ortega, 6 — ready for school, and takes them to the bus stop as Ortega watches Kaylee.

When she gets back, Kaylee is already awake. Ortega leaves for work, but he must say goodbye to Kaylee or she gets fitful, Gonzales said.

"One thing that upsets her is if her dad leaves to work and he doesn't go into the room and tell her, 'Bye, I'll see you later,' " Gonzales said. "I tell him, 'She needs to hear you say that you're going to come back.' "

By 8 a.m., Kaylee is fed and given her medications. The day from there generally varies. On a cloudy and rainy Thursday in October, Kaylee didn't have any appointments and neither did her grandfather, Anthony Ortega, who is temporarily living with the family of five in their two-bedroom, single-wide trailer while he waits for a heart transplant.

Gonzales volunteered to baby-sit two of her young cousins and the living room was filled with laughter and playful yelps — something that didn't sit well with Kaylee. Wearing purple footsie pajamas in the arms of her grandfather, Kaylee squealed slightly a few times, which indicated to her mother she was having a small seizure. Gonzales jumped up from where she was sitting, hoisted up her little girl and held her tight until the seizure had passed.

"See," she told the two youngsters who had grown quiet. "I told you, you have to be quiet.

"That was a small one," Gonzales explained. "There are times when she gets big ones, and she does do that sound. I call them the 'monkey sounds.' "

Kaylee doesn't like to be around a lot of people. Holidays are especially hard for her.

"She likes her own space," Gonzales explained. "She doesn't like too many people around. That's another thing that's hard for us is holidays. She gets real annoyed with a lot of noise and there are times ... she just gets overwhelmed."

Although Kaylee doesn't talk, Gonzales has learned to decipher her cries. She knows Kaylee's cry when she's hungry, when she's tired and when she wants to be left alone. Kaylee also has her own hand signs to let her mom know she's hungry.

"She did her first sign a year ago," Gonzales said. "She started tapping her mouth and we automatically knew that it was food she wanted."

Kaylee usually rests on days she doesn't have appointments. Gonzales gets household chores done like laundry and cleaning.

She tries to limit doctor appointments, because it's too difficult to take Kaylee out, especially when it's cold. But when Kaylee has doctor appointments, her complicated, heavy, two-part special wheelchair must be broken down for transport. It takes 20 minutes just to break it down and load it in the back of the family's diesel truck. Gonzales then has to get Kaylee dressed and ready and carry the 25-pound child to the truck and strap her in.

Since Gonzales' reliable car broke down, she's been having to use a big Ford diesel truck that costs $65 to fill up twice a week when she uses it frequently. She has to call for her mother-in-law to watch Kaylee when the family needs groceries.

But appointments or no, Gonzales and Kaylee are always back to pick up the boys and get dinner ready by 6 p.m. Kaylee sometimes gets a bath after dinner, but it's a difficult task. Gonzales doesn't have any special equipment to bathe Kaylee, so she has to lie flat down in the tub, Gonzales said.

Down on their luck

While many people are down on their luck these days because of the downtrodden economy, Gonzales and Ortega seem unable to catch a break. Ever since Kaylee's 2007 surgery in California, the couple have fallen behind on their bills. Her father-in-law suffered a heart attack that required him to be hooked up to a machine that helps his heart pump while he waits for a transplant, so he's had to move in with them.

"I'm the man with no heart," Anthony Ortega said seriously.

Her husband purchased a new 18-wheel rig to try to get more trucking jobs, but the rig broke down; and this after they already had to sell two of their other rigs.

"It's depressing," Gonzales said sadly. "It's hard raising a sick baby, you know. I wouldn't put that on anybody. When we had her, we always thought she was going to be healthy and she was going to be a normal child; then we find out she was sick. Right now we don't even know if she's ever going to walk or ever going to talk."

Gonzales said she hasn't gotten those answers from Kaylee's doctors and her worst fear is that Kaylee won't be able to walk, talk or outgrow her seizures.

"We're just trying to get ready for when that day does come," Gonzales said. "If she doesn't walk, we're going to need a bigger house to get her through — something she can live in comfortably."

Currently, Gonzales is looking for funding to purchase a car in which she can safely transport Kaylee. To donate, visit Los Alamos National Bank and donate to the Kaylee Brittney Ortega Trust.

"I know it's hard now for people to help," Gonzales said. "But I'd appreciate it so much. I'd be so thankful for all the help I can get for her."

Contact Ana Maria Trujillo at 986-3084 or atrujillo@sfnewmexican.com.