LAWRENCE — At first glance, Amelia Castillo looks like your typical 1-year-old — she enjoys playing with her Dora the Explorer doll, listening to her radio and swaying to music.
Her high energy, captivating smile and charm mask the debilitating disease she suffers from — dilated cardiomyopathy, a condition that weakens and enlarges the heart, making it unable to pump blood efficiently.
Amelia needs a heart transplant in order to survive and was placed on a waiting list for one last month.
“There is not one day that I don’t cry before I go to bed,” said Amelia’s mother, Gladys Tejada, 29. “I hardly sleep because I’m always checking on her to make sure she’s breathing. Every night I pray to God to make her OK.”
Amelia was born Jan. 5, 2007, weighing 6 pounds, 12 ounces and measuring 191/2 inches. Other than a small surgery to remove an umbilical hernia, she appeared to be healthy.
Then her world turned upside down in September when Amelia began vomiting and refused to eat.
Her parents, Tejada and Charlie Castillo who have been together for 15 years, thought the symptoms were due to her teething. Amelia’s condition got worse and they took her to Lawrence General Hospital, where they were told she had pneumonia.
Within a few hours, Amelia was rushed to Boston’s Children’s Hospital, where the diagnosis was worse — doctors discovered she had dilated cardiomyopathy.
Amelia spent a month and a half at Children’s Hospital, with her mother at her side. Doctors got her condition under control and she is back home now, but goes to the hospital for weekly checkups and continues to wait for a new heart.
“She’s very playful and doesn’t act like she’s sick,” said her aunt Jennifer Castillo of Lawrence.
Doctors are keeping a close eye on the bubbly baby with curly black hair because Amelia only weighs 18 pounds and will have to be hospitalized if she does not gain more weight.
“She needs to be healthy in case she needs surgery,” Tejada said.
Before Amelia became ill, Tejada said, she took extra precautions to prevent her only child from getting sick, including using a humidifier in her room and never going out with her on rainy or cold days. Tejada said she blamed herself, thinking Amelia got the disease from toxins in the house or a household product Tejada was using.
“I was mad at life and at God because I couldn’t understand why this had to happen,” Tejada said.
After much reflection at Masses at St. Patrick Church and during prayer services she hosted at her home, her faith was renewed.
“Going to church and talking to people made me understand that there is no answer,” Tejada said. “Everything is in God’s hands.”
Tejada has returned to work at Kalil Dental Associates in Methuen, while her mother, Daysi Tejada, takes care of Amelia.
“Being at work makes it easier for me because it takes my mind away from what she’s going through,” Tejada said of her daughter.
But Tejada admits calling her mother every chance she gets to check on Amelia. Castillo, 34, works at ICP, a manufacturing company in Lawrence, and his schedule allows him to drop in and see their daughter several times a day.
Amelia’s illness has been difficult not only on her parents, but on the extended family as well.
“It’s been so hard,” said Jennifer Castillo, Amelia’s aunt. “There are days when we just cry because we don’t know what’s going to happen.”
Despite her illness, Tejada disciplines Amelia, while her grandparents and her aunt spoil her.
“I’m not allowed to buy her more toys,” said Jennifer Castillo, a human resource manager for Wal-Mart.
Although Tejada is fully aware that her daughter’s future is uncertain, she said she would rather enjoy every minute she can with Amelia than think about what lies ahead.
“I can’t imagine my life without her because she means the world to me,” Tejada said. “She is the best gift God has ever given me.”
Merrimack Valley
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Carl Russo
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