A life made richer by Laila June 2012
BY STEVE GIBBS
KEY LARGO — Nada Jones said she knew something was wrong as soon as she saw the sonogram. She gave birth at home to Laila on Sept. 6, 2005, her third daughter. Laila is a Down syndrome child. “I intuitively knew it. I just knew,” said Jones, 46, a Key Largo mother from a Lebanese and Palestinian family on her father’s side and a German-Italian family on her mother’s side. Jones grew up in London and still speaks with a trace of an English accent. Her husband, Joe Jones, is a Texan who is a commercial airline pilot. They have resided in Key Largo since 1999.
“At first it was very tearful and emotional,” she said last week as Laila, now 6, and her younger sister, Mira, 4, sat on the floor at Café Moka and sipped hot chocolate. It was not long before they were running around barefoot, playing and laughing. “There was some unpleasantness,” Jones said, remembering the weeks following Laila’s birth. “The whole family tossed blame for her Down’s condition back and forth. ‘It’s the strict German, the Arabs marrying their cousins, the Texans interbreeding.’ The whole family tossed blame for her Down’s back and forth, but we all got over it. “This is not hereditary. It is not the Germans or the Arabs or the Texans,” she said. “It’s a random thing.” Jones explains briefly that the 21st chromosome does not separate properly causing an extra chromosome. Normally, a baby is born with 46 chromosomes, according to the Center for Disease Control. Babies born with Down syndrome have an extra copy of one of these chromosomes. This extra copy changes the body’s and brain’s normal development and causes mental and physical problems.
Although Leila weighed a normal 7.7 pounds at birth, she was born with a ventricular septal defect, a hole in the ventricular septum, the wall dividing the left and right ventricles of the heart. It ultimately closed off without surgery. Despite the rough start, the Joneses turned adversity into a loving family with a positive attitude. “I’m never a victim. The sky is not falling. Joe and I both went down, but then we rose up. We kept going. We reached into the depth of ourselves,” Jones said, matter-of-factly. Adversity can break a family or make it stronger. “This has challenged us and given us more strength,” she said. “We are strong people, but that doesn’t mean I haven’t gone into a corner and cried.” Jones says she is grateful to the Upper Keys community for the way folks have treated Laila. “This community accepted and welcomed Laila in the most magnanimous way,” she said.
Laila has been a student at Treasure Village Montessori charter school since she was 4. “Laila has a lot of determination, and when she sets her mind to something she gets it done,” said Kelly Mangel at Treasure Village Montessori, known as “Miss K” by her students. “She also has a lot of curiosity and the Montessori program is conducive to that. She gets the social interaction as well as the answers to her questions.” Jones has reached out to other families with Down syndrome children and founded the non-profit Florida Keys Down Syndrome Educational Trust, which pays for therapy, activities and extracurricular programs for Down syndrome children. “Laila has inspired me,” she said. “If there is ever a time that I feel like quitting, there’s my inspiration. She’s like the compass that always points the right way, the right direction.”
Recently, Laila was selected as a magazine model for the major national retailer, Target. “I sent photos when I heard they were looking for special needs kids as models,” Jones said. “In March this year we went to Cutler Ridge where they put her in a swimming pool where she modeled swim goggles. She will be in print and online ads this week.” Laila is also a dancer. Her mom proudly tells of Laila appearing as a snowflake with a Russian ballet troupe in “The Nutcracker” while attending classes at On Your Toes Dance Studio. “She has been working with Leslie Bennett and was just in a performance at the [Murray E.] Nelson [Government and Cultural] Center. “She has two older sisters, Alia, 12, and Jena, 9, who set a great example for Laila. She has made all of our lives so much richer.”