MaKyla’s journey to New York City
Monica Boggus was at work when her doctor called to tell her the little girl in her womb had Down Syndrome. I’m obligated to let you know you can terminate, he told her.
“I am not terminating my baby,” Boggus told her doctor. She would have to repeat that commitment many times to her geneticist.
When Boggus asked her husband, Michael, how he felt about the baby’s genetic disorder he said, “I don’t care if she’s purple and has eyes in the back of her head — she’s mine.”
“I couldn’t have loved my husband more than at that moment,” says Boggus.
MaKyla Cari came into the world on December 17, 2007, weighing just 5 pounds 12 ounces. Down Syndrome was not the only challenge she faced.
She also suffered from a heart murmur and an artery-blocking condition called Moyamoya. Both would land her in the hospital.
At six months of age and only nine pounds, the baby underwent open-heart surgery at Vanderbilt University Medical Center. She recovered quickly and a little over a year later was calling her grandfather Big Daddy.
Then, at 23 months old, MaKyla suffered a stroke, a result of her Moyamoya, which had gone undetected until that time.
“Only a few hospitals in the country perform the surgery necessary to correct the problem,” says Michael Boggus. The Bogguses did their homework and chose Boston Children’s Hospital, the one with the longest record and greatest success rate with the procedure.
“My home church from before our marriage, Union Grove Baptist in Chattanooga, donated money to help with expenses,” says Boggus, “and my husband’s home church, the one we go to now, Joseph Chapel AME, did fundraisers for us.”
The surgery in Boston was successful, though MaKyla still suffers some speech delays and weakness on her right side due to the stroke.
“Everyone is different,” says Boggus. “MaKyla has her differences, too. Downs is not the end of the world for us or MaKyla. In many ways, it makes our world better.”
To support her mother’s claim, 8-yearold MaKyla waltzes into the living room in a ballet tutu and a silver tiara, but she’s worried because she can’t find her wings. “She loves clothes and shoes,” says her mother. “MaKyla brings joy everywhere she goes. There’s not a mean bone in her body.”
But Boggus says that there are challenges to bringing up a child with Downs. “You have to plan ahead. You have to face the fact that at some point you may not be around or able to care for her and you need to prepare for that.”
The Bogguses are members of the Chattanooga Down Syndrome Society (CDSS), which offers an array of support, including classes to help with the many issues parents of Downs children face, from potty training to establishing living trusts to make sure children will be cared for according to their parents’ wishes should the parents become unable to do it themselves.
Boggus hopes to
someday see a grown MaKyla sharing an apartment with another young woman with challenges, maybe working a job or involved in meaningful activities, always out in the community bringing her contagious happiness to others.
To get to that point, Boggus says, MaKyla will need the best education she can get. That’s why the family moved to Catoosa County.
“The school MaKyla attended in kindergarten was awful,” says Boggus. “She was segregated from other children, called retarded and never challenged to learn.” A friend who had moved to Catoosa County in hopes of finding a better school for her teenage son with Downs suggested the Bogguses do the same.
“Now MaKyla goes to Ringgold Primary,” says Boggus, “and they’re just wonderful. She’s learning, she has friends, she interacts with all kinds of children. The teachers are loving and kind.
“When my daughter grows up and runs into someone she went to school with in the grocery store,” Boggus says, “I want them to say, ‘Hey, MaKyla! I haven’t seen you in awhile,’ not ‘oh, there’s that retarded girl who went to my school.’”
MaKyla is all bubbly happiness, winged princess, tickles, belly laughs, and Elmo and Cookie Monster (she’s met both in person and swooned over them), her mother says. “If you take the time to get to know her, you’ll find out she’s smart and fun. The kids at school and church love playing with her.”
“MaKyla lives life without fear. She’ll try anything. She’ll play with any child,” says Boggus. “I want her to be able to live in a world that doesn’t fear her because she’s different. My child will never be a mass murderer. She’ll never mistreat someone. She’s part of what’s good about the world.”
Boggus says that watching her daughter navigate life is teaching her how to be a better person. “MaKyla has a calming spirit when she senses you’re stressed. She picks up on it and tries to make it better. She knows how to not sweat the small stuff, the things over which you have no control.”
Keeping in touch with other parents of Downs children is important to Boggus. She stays connected through Facebook and the family’s involvement with CDSS, including participating in CDSS’s annual Buddy Walk that raises money for support services for Downs families. This year’s Buddy Walk takes place Oct. 1 at the AT&T Field in Chattanooga.
The National Down Syndrome Society (NDSS) sponsors an annual conference as well as a yearly video display of people living with Down Syndrome aimed at “showing that we are more alike than different.”
Conference locations
vary, but the video is always shown on a mega screen in New York City’s Times Square in conjunction with the New York Buddy Walk, one of 260 walk events nationwide this year.
Photos are submitted to NDSS for the video. This year, 2000 photos from around the world were sent in. MaKyla was one of 400 chosen to appear in the 45-minute presentation that will kick off the New York event on Sept. 17.
“It’s so exciting,” says Boggus. “We may not be able to make it to New York for the Buddy Walk without support, but we’re trying.”
The Bogguses have already priced transportation to the Big Apple. At $600 per ticket, flying in was out of the question. So the family is aiming to make the trip by
Amtrack, which will run $600 for all three of them. A GoFundMe account has been set up to help offset travel costs, accommodations and some other costs.
“I’d like MaKyla to see the Statue of Liberty while we’re there,” says Boggus. “I’d like to see the Empire State Building and the 9/11 Memorial.”
If you’d like the help the Boggus family visit New York for the National Buddy Walk, visit gofundme. com/2ebfdkpk.