We shared the story of “Baby D” — Di’Laine Marie — back in February when she was 8 months old. Baby D was born with Gaucher (go-shay) Disease, Type II. Doctors told her mother, Kelsie Smith of Catoosa County, to take her home, put her on hospice and let go. They said Di’Laine was blind, deaf and hopelessly ill with an enzyme deficiency that would quickly result in fatal brain and organ damage.
Baby D celebrated her first birthday in July and is now working on her second year. She is neither blind nor deaf and she has weathered her treatments like a real trooper.
To be sure, Baby D faces daily health challenges, says Smith. “We spend a lot of time running to doctor appointments.” There have been scares and Baby D sees the inside of a hospital in a month more often than most people do in a lifetime, but she’s pulled through each time.
In between medical appointments, Baby D grins when her grandmother teases her and threatens to steal her pacifier, loves to have someone pat her mouth while she makes noises to create sound effects, and has a good repertoire of baby talk. She’s a happy little girl with an adorable smile and a delightful personality.
Smith and her family and other supporters make the most of every well moment Baby D has — a trip to the ocean, a cookout at Chester Frost Park, a Walmart adventure with one of Bady D’s nurses.
The next big step for little Di’Laine is a trip to Fairfax, Virginia, in November, where her regular specialist and other doctors from around the world will spend almost a week observing and examining her and other children with Gaucher Disease in an effort to learn more and come up with better treatments.
The trip is not covered by insurance, says Smith, so a benefit is being held to raise money for travel and medical expenses. The public is invited to attend, enjoy and help Baby D.