When Samiyah Turner and her family arrive at Lake Martin for Children’s Harbor retreats, “our world stops for a second,” says her mother, Claudia Latchana. “Despite our busy lives, despite everything we go through . . . we get a chance to breathe.”
Typically, the family’s schedule revolves around frequent appointments for 3-year-old Samiyah, who was born with Beckwith-Weidemann syndrome, a rare overgrowth syndrome that affects roughly 1 in 10,500 to 13,700 children. At birth, Samiya measured 2 feet 3 inches long, and initially her family thought she was a larger child who had inherited her father’s height. But complications soon surfaced. Baby Samiyah often choked while bottle feeding because her tongue was too big for her mouth, and she had a herniated belly button and low blood sugar. The family received the official diagnosis following genetic testing when Samiyah was a few months old.
Children with Beckwith-Weidemann syndrome receive an eight-year care plan that includes routine ultrasound, lab, and blood work because they are prone to developing kidney and liver tumors that can lead to different cancers. While most of those children have checkups every three months, for about a year, Claudia drove Samiyah to Birmingham every two weeks from their home in Eufaula to monitor high levels of an enzyme produced by the baby’s overfunctioning liver. The two also began traveling to Dothan each week for therapy sessions to help Samiyah with eating and, later, with crawling, walking, and speaking. Samiyah also has experienced sleep apnea because of her tongue and overgrown adenoids that had to be removed. More recently, she was diagnosed with autism.
Throughout their journey, Children’s Harbor has provided the family, which also includes dad Dontavius Turner and 2-year-old Layla, with precious moments of respite and recovery. Playtime at the Harbor Family Center, complete with prizes from the claw machine, served as rewards for Samiyah following appointments at Children’s of Alabama. She also participated in Champions for Our Children, the partnership between Children’s Harbor and UAB Football, in 2023.
The young family first visited Lake Martin for 2024’s Spring Break at the Lake and returned this year. They also attended the Rare Disease Family Retreat in September 2024. There the girls are “genuinely happy,” Claudia says, and everyone enjoys coloring, making crafts, and playing games together. For mom and dad, the peaceful setting offers a relaxing escape from worries about schedules and appointments. Dontavius has even used the downtime to rediscover his childhood love of creating art. “I didn’t know the man could draw” until the family came to the lake, Claudia says.
The retreats also provide the setting for celebratory reunions with extended family. Samiyah’s young cousin attends because she, too, has a rare disease—Langerhans cell histiocytosis, which can affect tissues and organs throughout the body. Claudia and her sister-in-law plan the trips together, and “she’ll bring my mother-in-law and father-in-law as well,” Claudia says. “It’s a vacation for all of us together.”
Today Samiyah is a “giant girl with a giant heart” who can run, jump on a trampoline, and play T-ball, Claudia says. Yet she still faces struggles, especially in understanding the syndrome that makes her different. Claudia ensures that Samiyah gets extra love on the hard days and inspires her to embrace her progress and resilience—and the fact that she’s not alone. “One out of every 11,000 sounds so rare, but people forget that rare is still common,” Claudia explains. On social media, “I’ve seen hundreds of children with this syndrome.”
The family can always rely on Children’s Harbor for a boost of hope and optimism right when they need it. On a recent drive home from Lake Martin, Claudia and her husband discussed the future, and how they encourage Samiyah to endure tough times so that her years ahead will be easier: “I tell her that she’s in the storm now, and her sunshine comes after,” Claudia said.
Thinking about the retreat they had just left, Dontavius turned to her and replied, “This is our sunshine. I can’t wait for the future, when it’s [always] like this.”
