MIAMI HERALD WISH BOOK | 2008
Young mom yearns to see her girl smile
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BY PENNY McCREA
pmccrea@MiamiHerald.com
Emily Rivera stares unblinkingly at a visitor.
The 2 ½-year-old is undeniably cute. But what is cute now will not be in a few years.
Emily suffers from Moebius syndrome, a rare condition that paralyzes the muscles of her face and eyes. Her face is expressionless. She can't speak. She can't blink.
Emily lives with her mom, Diana; her half-sister, 5-month-old LeAnn; her aunt Mayra; Mayra's 6-year-old daughter, Brianna; and her grandma in a tidy apartment in a working-class community in Florida City. Diana and her daughters moved in after she decided she could no longer live at her dad's home.
Diana is barely more than a child herself. She turned 18 in November. Emily was the result of a middle school romance, she explains.
While Emily goes to preschool, Diana studies for her GED. She dropped out of high school to care for her daughter, but eventually she wants to become a genetic counselor. She's studying now, she says, to be a medical assistant.
Diana has learned a great deal about Moebius syndrome and keeps a detailed folder of letters, photocopies and records. The syndrome results from the failure to develop the cranial nerves that serve the face. There are only about 600 people in the United States who have the condition, and why it happened to Emily is a mystery.
When Emily was born at Jackson South, it became apparent quickly that there were problems. She couldn't suckle. She was moved to Jackson Memorial, where she stayed until Diana got the hang of fastening Emily's mouth around a bottle of expressed milk. And because Emily can't blink, she must have ointment put in her eyes every night, and when she goes outside, she must wear sunglasses.
Diana takes Emily once a week to Miami Children's Hospital. ''She won't get worse,'' she says, ''but she won't get better.'' With therapy, Emily should be able to talk at about 4. She's developmentally delayed, but will eventually catch up. This isn't a condition that affects intelligence, and there's no medical reason that she shouldn't go to college and have a successful career.
With the help of a sign-language video, Emily has learned a few words to sign. She makes a cradling motion with her arms to indicate ''baby,'' and pulls imaginary whiskers for ``cat.''
Preschool has been a blessing because it's where Emily learns to interact with other children -- and to express her feelings. ''When she's mad, she doesn't want to talk to nobody,'' Diana says. ``She stamps her feet around.''
For the moment, Emily also needs to wear braces part of the day to straighten her legs. They hurt so she wants them taken off. How does she make that known? She'll bring her shoes over or point to her feet, Diana says.
Officially, Diana's Wish Book request is for a new bedroom set for the room she and the children share. Baby LeAnn's crib is broken so she sleeps in Diana's bed. Emily usually crawls in with them, too. Diana would also like toys and clothes for the girls.
When asked if there's anything else she would like, Diana looks down at her feet and says, in a soft, shy voice, ``There's a doctor in Canada.''
This is her real wish: to give Emily a smile. A Toronto-based ''smile surgeon'' has operated many times on children with Moebius syndrome. Diana explains -- and this is when she brings out her folder -- that he takes muscle, with the nerves, from the child's thigh and implants it into the face. The nerves eventually grow and connect, and the child can smile. She wants Emily to see this doctor and, she hopes, for him to agree to give her a smile.
Diana also confesses to wanting her aunt Mayra to have a car with working air conditioning. Because the car, which they share, doesn't have it, the windows must be kept open and dangerous dust blows into Emily's unblinking eyes.
A visitor asks Diana if, given the chance, she would do this all over again and she unhesitatingly answers, ``Yes.''
So, does she think having a child so young is right for other young women? No. ''It's hard,'' she says. ``They should finish school, go on to a career and then think about having a family.''
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