Brittney Camp calls him “Itty Bitty,” but his real name is Rayland. He’s her 4-month-old son, and each morning, she thanks God he’s still here. On Sept. 19, Camp and her husband, Reese, both of Milton, welcomed baby Rayland into the world. He was four weeks premature and weighed 4 pounds, 4 ounces. After a blood test, the Camps found out Rayland had a rare genetic disorder. He was born with Type 1 rhizomelic chondrodysplasia punctata, a developmental disorder characterized by skeletal abnormalities and intellectual disability. “I was devastated,” Brittney Camp said. Rayland spent six weeks and two days in the Neonatal Intensive Care Unit at Sacred Heart. Not many people have heard of the disease — Camp said many doctors aren’t even familiar with the rare disorder. Rayland was born with cataracts in both eyes and has shortening of the humerus and femur, making his legs and arms short. He has stippling — small holes — in his bones and was given a feeding tube when he was five weeks old. Recently, he started having seizures. “He’s a special baby, that’s for sure,” Camp said. “He requires a lot of work.” Both Brittney and Reese were carriers of the gene. The prevalence of RCDP1 is estimated less than 1 in 100,000, according to the National Center for Biotechnology Information. In a review of 69 children with RCDP, 60 percent survived the first year and 39 ¬percent the second; a few survived beyond the age of 10. Most deaths were secondary to respiratory complications, according to NCBI. The Camps have another son, Pistol, who is 2, and Reese has a daughter, Shyanne, who is 6. For the family of five, this diagnosis has been rough. They are moving out of their home in Milton to live with Camp’s parents in Pace because costly trips to see experts and specialists have been adding up. Rayland underwent four surgeries, one to put in the feeding tube and three on his eyes. “Most doctors haven’t seen one of these children, and not much research is being done,” Camp said. “It’s frustrating going to doctors and not getting any answers.” Rayland sees his pediatrician every two weeks and has physical therapy once a week. Camp will be traveling to Tampa at the end of the month to see another specialist. To spread the word about the disorder and share Rayland’s story, the family started a Facebook page — Hope for Rhizokids Team Rayland — where they post updates and information about current fundraisers. The most direct fundraiser can be found at www.gofundme.com/helpittybitty. So far, $305 has been raised to help the family. Brittney Camp is part of a small network on Facebook where she can talk to other families who have children with the disease. She has learned of one person with RCDP1 in the United Kingdom who is 33, and she has been in communication with one family who has a 15-year-old child with RCDP. But despite hearing stories of others that have beat the odds, Camp said she has had many sleepless nights. “It’s a scary situation to be in just because you don’t know how long he’s going to be here,” she said. “There’s no future planning as I would for my 2-year-old. I just wake up each day and thank God he’s still here.” Helping ‘Itty Bitty’ Search Hope for Rhizokids Team Rayland on Facebook to see current fundraisers. Visit www.gofundme.com/helpittybitty to read baby Rayland’s story or donate to the Camp family.
This article originally appeared on Santa Rosa Press Gazette: Family seeks help for baby with rare disorder