BONAIRE -- The next time you see a notice for a blood drive, please remember Hayleigh Marks.
Hayleigh cannot give blood.
She is a reason why we give blood.
Hayleigh is a seventh-grader at Bon-aire Middle School. She has a face full of freckles. She loves to eat tacos and watch scary movies.
A week from today, she will go to The Medical Center of Central Georgia with her mom, Brandi Voltz. They will arrive at 8 a.m. and wont go home until the long shadows are falling across Pine and Hemlock streets.
She will receive a transfusion of two units of A-positive blood, the equivalent of about a quart. It is the same routine every three weeks. This is what keeps Hayleigh alive.
Brandi does not have to do the math. She keeps the numbers in her head, like flipping pages on a calendar. This will be Transfusion No. 255 for her daughter.
By next Thursday, Hayleigh should be back to feeling normal, whatever normal is for a 12-year-old with a blood disorder so rare that fewer than 1,000 people in the world carry it around.
Hayleigh hopes to rally in time for Halloween. She will dress as a witch. She and her mom went to Party City to buy the costume. She has been a witch before. And a zombie too.
She was once a princess and a butterfly fairy in her less-Gothic days. She has never been a vampire, although she could qualify medically. If she had as many needles sticking out of her skin as she has had stuck in, she could pass as a porcupine.
In the carpool lane at Bonaire Middle School, you will find SUVs and minivans with oval-shaped stickers displaying three letters. They are popular souvenirs from beach vacations and trips to the mountains.
Hayleighs mother and stepfather, David Voltz, have a Cure DBA decal on their back windshield. It stands for Diamond Blackfan Anemia.
DBA might not sound Halloween-like frightening, but it is a terrifying reality for Hayleigh. While our bodies have full-time jobs, constantly working to produce red blood cells, Hayleighs bone marrow is on medical disability.
Hayleigh was diagnosed with DBA when she was 2 months old. Doctors told Brandi her daughter might not live to be a teenager. Hayleigh will be 13 in March.
Its all she has ever known, Brandi said. She started asking questions when she was 4 years old. She wanted to know why nobody else had to get blood like she did. I have always been honest with her. As she has gotten older, she has learned to accept it.
Keeping up with her schoolwork and participating in physical activities can be challenging. The blood transfusions put her at risk of an iron overload. She is given an injection in her leg every night. It is a process known as chelation therapy, used to remove metals from the bloodstream.
For the past two summers, Hayleigh has attended Camp Sunshine at Sebago Lake in Maine. It is the only camp of its kind in the U.S. for children with life-threatening illnesses and their families.
Brandi called the experience life changing. More than 100 DBA patients were at this years camp, including three from Milledgeville, Statesboro and Atlanta. Some of the top DBA researchers in the nation were there to discuss recent developments in the study and treatment of the disorder.
David and Brandi are committed to raise both awareness and money for the underfunded DBA research through the Diamond Blackfan Anemia Foundation (www.dbafoundation.org).
They also want to emphasize the importance of giving blood, not just for surgery and accident victims but regular patients like Hayleigh.
It is more than just pulling into a garage for an oil change every 21 days. It is the sustenance of life.
Reach Gris at 744-4275 or firstname.lastname@example.org.