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Sisters Defy Odds, Mom Seeks Help

Tribune photo by D'ANN LAWRENCE WHITE

Monica McIntyre connects 3-year-old Trinity to the ventilator to ease a sudden seizure. The ventilator and oxygen tanks accompany the little girl wherever she goes.

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By D'ANN LAWRENCE WHITE

The Tampa Tribune

Published: July 5, 2008

SEFFNER - Their names are Heaven and Trinity, but Monica McIntyre likes to call them "my little miracles."

Both daughters have defied all medical odds. McIntyre believes their ability to laugh, play and communicate with her is nothing short of miraculous.

Heaven is 5 1/2 years old. She has survived 3 1/2 years longer than doctors predicted. Trinity, at age 4, has lived twice as long as expected.

"Every day with them is a gift from God," McIntyre said.

Both girls were born with a rare inherited disorder called Leigh's disease that causes the central nervous system to rapidly degenerate between ages 3 months and 2 years.

The first symptoms include loss of appetite, vomiting, irritability, continuous crying and seizures. That's followed by general weakness, lack of muscle tone, respiratory problems, heart problems and kidney failure. The disease almost always is fatal. Children rarely live longer than two or three years.

McIntyre, 35, had not heard of Leigh's disease, much less suspected she carried the gene, when she became pregnant with Heaven.

"I was told I wouldn't be able to have children," said McIntyre, who has a genetic heart defect. "So when I got pregnant, it was like a gift from God in heaven. That's why I named her Heaven."

The pregnancy, however, proved a difficult one. McIntyre and her baby nearly died when she went into premature labor at 28 weeks in 2004.

When mother and daughter finally went home, Heaven remained lethargic and didn't gain weight. Doctors chalked it up to the premature birth, and McIntyre had no reason to believe otherwise.

It wasn't until she was seven months pregnant with her second child that doctors gave her a definitive diagnosis for Heaven: Leigh's disease. All she could do was pray that Trinity wouldn't inherit the deadly disorder.

"Trinity was born Sept. 1 and started getting sick at six months," McIntyre said. "I found out she had the disease, too, on Dec. 23, two days before Christmas."

By then, Trinity was critically ill. Her heart was enlarged and she desperately needed a transplant. But she wasn't a candidate for a transplant because her prognosis was so poor.

"They basically sent her home to die," McIntyre said. "Instead, her heart shrunk to normal size. Both girls have amazed the doctors. They're not supposed to improve, but they have. The doctors don't understand it."

Not only have they improved, but the girls have developed their own personalities, ways of communicating, likes and dislikes.

"Heaven giggles when we put her in the wading pool, and Trinity loves music. She'll coo to you like she's singing," McIntyre said. "Heaven wants to do everything right away, and Trinity has the patience of a saint."

Although her marriage to Heaven and Trinity's father, Kevin McIntyre, did not survive the pressure of caring for two children with never-ending emergency medical needs and the associated costs of that care, Monica McIntyre said she discovered a strength she never knew she had.

"I won't lie, it hurts sometimes. I wish I could take them to McDonald's like other kids," she said. "But I've stopped living in fear that something could happen to one of them at any moment. Now I live in hope. If I live in fear, I don't live for my kids. None of us are guaranteed tomorrow. I'm just honored to be their mother."

Disney fairy-tale characters decorating the house camouflage the ventilator, oxygen tanks, medicine cart and pill bottles - necessary fixtures, along with a nurse who helps McIntyre care for the girls 24 hours a day. That care includes giving the girls 85 medications each day and treating them during their frequent seizures.

Although she depends on Social Security and Medicaid to meet expenses, McIntyre remains optimistic.

"These girls are never a burden. They're a special delivery from God," she said. "And I have so much to be grateful for. I've gotten so much help from the community."

When fellow Seffner resident Sheri Brown heard about Heaven and Trinity last year, she launched a fundraiser to help finance renovations to accommodate the girls' needs. That included removing moldy carpeting and replacing it with tile, remodeling the girls' bathroom, removing a wall to create one large bedroom and replacing the home's roof.

"As soon as I met these precious little girls, I told my husband we had to do something to help," Brown said.

"So many people have come forward," McIntyre said. "I thank them all from the bottom of my heart. I'm just so humbled. The kindness and generosity toward me and my babies has just been overwhelming."

Brown said the family will continue to need the community's help.

"We are praying for people willing to donate $5, $10, $20 a month to help Trinity, Heaven and Monica's situation," she said. "There have been a few very rare cases that a child with this medical disability has lived to early teens. We are praying folks will find it in their hearts to help the girls."

Brown, who runs the nonprofit Cookson Hills Toy Run Inc., can be reached at (813) 643-5758, (813) 842-2982, by e-mail at cooksontoyrun@aol.com or checks can be mailed to her at P.O. Box 113, Seffner, 33583-0113.

Brown also has set up a Circle of Faith account for Trinity and Heaven at Mercantile Bank, 1018 W. Lumsden Road, Brandon, FL 33511. Checks can be sent to account manager Kathy Vircik's attention with Circle of Faith for Trinity and Heaven written on the memo line.

Other needs include: a concrete slab poured for a generator that was donated to keep medical equipment running in case of a power outage and a concrete ramp at the front door for wheelchair accessibility.

The family also is in need of a washing machine, shelving, yard maintenance, house cleaning and laundry help, furring strips for the ceiling in the girls' room, sliding mirror doors for their closet, tile work in the girls' bathroom, painting, a computer for the nurses, a small swimming pool or hot tub for physical therapy, a van accessible to children with disabilities, precooked meals, size six Huggies diapers, vinegar, distilled water, baby wipes, medical equipment and a new roof for the back porch.

Reporter D'Ann Lawrence White can be reached at (813) 657-4524 or dlwhite@tampatrib.com.

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