HUNTSVILLE, AL (WAFF) - Little Cole loves playing with friends and family at the St. Jude Affiliate Clinic at Huntsville Hospital for women and children.
Visits to St. Jude have become very commonplace. He and his mom come here every third week for a blood transfusion. Not long ago, no one could figure out what was wrong.
His mom, Caroline Kelley, said it was a medical mystery and a parent's nightmare. "New Year's Eve noticed he was kind of breathing funny," Kelley recalled
The new parents gave way to caution and took him to the hospital in Florence.
"The nurse met me at the door and grabbed him from my arms and ran," said Kelley. "They were trying to draw blood and couldn't draw blood. Nobody could tell me if he was going to be ok."
These frightened parents only knew he had very little blood in his body. "His hemoglobin was like 1.2 and it's regular or normal is 12. He was on the verge of death and no one could tell me what was wrong with him," added Kelley.
He was airlifted to Huntsville Hospital where his mystery condition was finally pinpointed. "When they told us Diamond Blackfan Anemia, it sounded like some scary bug or insect," Kelley said.
His bone marrow does not make red blood cells. So he comes to St. Jude Clinic to have donor blood transfused through a port.
Considered genetic, neither of his parents have the known genes. Cole's inheritance was a genetic fluke. He will have a 50% chance of passing DBA onto his children.
His mom would like to raise awareness about DBA as well as the importance of donating blood. "Without donors, Cole would not be here," said Kelley.
Although the condition is so rare, Caroline said as long as the blood is there and he takes the medicine to get rid of the extra iron - he should live a normal life.
Want to know more about Diamond Blackfan Anemia? Boston Children's Hospital has comprehensive information available online (http://bit.ly/HO2oFo).