ASHLAND – When Ryleigh Loges was just 48 hours old, the Ashland rescue squad rushed her back to the hospital after she turned blue.
Doctors determined an infection or heart defect was the problem. After being hospitalized for six days to get Ryleigh healthy enough for an operation, doctors performed open heart surgery on the infant.
Doctors determined Ryleigh suffers from 22q11.2 Deletion Syndrome, where a section of the 22nd chromosome is missing. The syndrome, known by many as the shortened name “22q,” can impact every system in the body, according to Ryleigh’s parents, Leighanne and Andrew Loges.
“It affects all areas of the body,” Leighanne Loges said.
Key characteristics of the syndrome include immune system deficiencies; growth delay; cognitive, development and speech delays; behavioral, emotional and psychiatric differences; kidney problems; feeding and gastrointestinal difficulties; palate differences and hearing loss, as listed on the website www.22q.org.
After the heart surgery, Ryleigh’s main symptoms have been a weakened immune system. Leighanne Loges said a cold can affect her daughter much more severely than the rest of the family.
“It takes two times as long for her to be fully A-OK,” she said.
Ryleigh has also had issues with her thymus gland, which is part of the lymphatic and endocrine systems. Other symptoms have yet to show up, Leighanne Loges said.
“It’s one of those wait-and-see syndromes,” she said.
Ryleigh’s parents took her to Children’s Hospital of Philadelphia this week to be evaluated for cognitive, speech and behavioral symptoms. Last Thursday, the family received a check from United Commercial Travelers Lincoln Council 104 for $3,264 to help with expenses for their trip to Pennsylvania. The evaluation is not covered by the Loges’ insurance.
The nonprofit organization raised the money with a poker run held on June 1 that included stops in Memphis, Ashland and Yutan, said UCT Past President Glenn Riensche.
The fraternal organization has helped two other families in the area with children that are suffering from medical conditions, said UCT member Doug Washburn.
“Our goal is the help the community,” he added.
There is no cure, but therapies and medical interventions are available to help symptoms of 22q. It is almost as common as Down Syndrome, but much less well-known.
Only about 10 percent of children diagnosed with 22q have inherited it from a parent. Leighanne Loges said neither she nor her husband passed it on to Ryleigh. The Loges’ two-year-old daughter Reese does not have 22q.
Andrew Loges said they hope Ryleigh will become part of a study on the syndrome so they can benefit others who are living with 22q.
“We want to help other families,” he said.