Imagine trying to fall asleep with your eyes open. Little Synaii “Princess” Thomas can’t close her eyes because she has severely everted eyelids. It is a rare congenital birth defect seen in black infants, in which the lids stay flipped up and open.
She also has exopthalmos eyes, which are bulging eyes, making it more difficult to close them.
To go off to dreamland the two-year-old tries to sleep face down in her pillow, but then she can’t breath properly. Her breathing problems stem from a cleft lip and bilateral facial cleft that cause swelling, mucous buildup, and improper drainage of the fluids.
Thomas’ grandma and legal guardian, Judith “Juicy” Lewis-Figueroa, said even with her birth defects her little princess is still a regular, active little tyke. She is meeting growth and developmental milestones for a normal two-year-old going on three.
“She smiles, sings, plays, and loves to interact with people just like any regular two-year-old,” Lewis-Figueroa said. “She has nice teeth, her speech is normal and her vision is perfect. She’s in majorettes and loves her dance classes at Music in Motion. The past two Saturdays she has even allowed me to leave her alone at class.”
The cleft lip is a separation or gap in the upper lip. The bilateral facial cleft occurs on both sides of the upper lip. When a fetus is developing the face forms by fusion of five different facial processes that must fit together like a puzzle. The cleft is formed when two of the processes fail to come together.
Lewis-Figueroa said they could see the deformity in a sonogram before Thomas was born. She was born Dec. 10, 2011, and weighed 3 pounds, 3 ounces. She was rushed to the neo-natal intensive care unit at Miami Children’s Hospital where she could get more intensive care than she could get locally.
Lewis-Figueroa said Synaii never had a baby bottle and was on feeding tubes her first two years. She added Thomas now loves to eat french fries and cake.
Lewis-Figueroa said her granddaughter had surgery at Miami Children’s Hospital in June to close the cleft and insert breathing tubes, which has helped her breathing and sleeping. She said Thomas will have more surgery in Miami the beginning of 2015 for reconstruction of her face and eyes. And there are more surgeries planned when she is about five or six years old.
Lewis-Figueroa said Thomas gets medical assistance, but it is very costly for her to fly back and forth, pay for taxis, and to get food and lodging. She has had a couple of fundraisers and a lot of support from the community. She said she is grateful for all the support and in particular from Stacey Plaskett, the newly-elected delegate to Congress. “I’m so happy she got elected,” Lewis-Figueroa said. “I expect she will be looking out for all the kids on St. Croix.”
She’s concerned about when Thomas goes to school and the possibility of kids bullying her little princess. She will be off to Head Start next fall.
“She has a great personality and she’s popular,” Lewis-Figueroa said. “Where ever I take her she’s treated like a celebrity and if I don’t have her with me people ask where she is.”
Lewis-Figueroa said she just wants her little granddaughter to have as normal a life as possible.
Anastasia Rivers, owner of Kisura’s Fashion Internet Boutique, heard about the little girl from Lewis-Figueroa, who is a regular customer of hers.
“I felt very emotional when I first met Princess Synaii,” Rivers said. “She’s a very a special little girl and everybody loves her. She’s smart, energetic, and high spirited. I have a weakness for kids and she takes the cake.”
Rivers decided she wanted to help Lewis-Figueroa with some of the expenses related to her granddaughter’s health care. Rivers is donating a portion of proceeds from an event she has organized, FashionLink V.I. Expose for a Cause. The Expose is a model search, audition and fashion show for big, tall, and plus- size male and female models. She added the event is in preparation for the FashionLink Fashion Weekend in May.
Rivers has put together what appears to be a big event with a lot of well known local entertainers coming out to help Thomas.
“It’s amazing how everything has come together and fallen into place for her cause,” Rivers added.
Mada Nile, The Mighty Pat, Jazzy Blue, Mind Body and Soul, and Kul E Band will be featured entertainers. Janet Rouse will sing gospel songs and the motivational speaker is Trojah Morgan. The Barron Spot Moravian Church “Faith Liturgical Dance Group” will perform.
Princess Synaii will sing “Jesus Loves the Little Children” and will be featured in a Music In Motion dance number.
There will be food vendors, raffle drawings and give-aways for kids. The Expose will be from noon to 6 p.m. Sunday at the Sunshine Mall, lower level. The suggested donation at the door is $1 and $5.
More information is available by calling Rivers at 340-643-1583.
