Courtesy by: phillyburbs.com
FLORENCE – Peyton Green may seem a little shy at first, but she’s as courageous and strong-willed as the Disney princesses she adores.
The 3-year-old has Diamond Blackfan anemia, a rare blood disorder that prevents her bone marrow from making red blood cells, which carry oxygen through the body.
Peyton has to receive a blood transfusion every three weeks to survive.
“She’s very brave,” said Ashley Green, Peyton’s mother. “She’s our hero.”
On Wednesday, Green, husband Thomas and the American Red Cross will hold a blood drive at the Florence Fire Department on Firehouse Lane from 1:30 to 7:30 p.m. to help treat the disorder.
“This is our second blood drive,” Green said. “We had one in May and there was a really good turnout. We collected 34 units of blood, so I decided to try and do it every six months.”
According to the Diamond Blackfan Anemia Foundation, patients with the disease can live long and healthy lives with appropriate medical treatment.
Blood transfusions are one of two common forms of treatment. The other, a corticosteroid medication, forces the bone marrow to make red blood cells, but Green said it didn’t work for Peyton.
Patients may elect to undergo a bone marrow transplant, but the foundation considers it a risky and dangerous procedure and Green said it’s the absolute last option for her daughter.
Green said Peyton was diagnosed with the disorder when she was 8 weeks old.
“She stayed in the hospital for seven days and had five blood transfusions,” she said. “They confirmed her diagnosis with a bone marrow biopsy.”
The biopsy revealed unusually low hemoglobin levels.
“They found her hemoglobin to be 2 (grams per deciliters),” Green said. “A normal level would have been 10 to 13.”
Advertisement
Green said Peyton has gone as long as four weeks without a transfusion but can’t risk waiting longer than that.
“If she does (wait four weeks), her hemoglobin will go even lower. She becomes irritable and she won’t eat and her bones hurt,” Green said.
But that wasn’t the case during an interview at the family’s home Friday. Peyton chased her new puppy around the living room and jumped into her mother’s arms. Her most recent transfusion was Thursday.
Peyton gets her transfusions at Robert Wood Johnson University Hospital in New Brunswick. Because they cause an elevation in her iron levels, Peyton must also take medication to remove excess iron from her body.
About a quarter of the people with Diamond Blackfan anemia have a known genetic cause, according to the federal Centers for Disease Control and Prevention, but Green said there are no other known cases of the disease in her family.
“I couldn’t understand why it happened to my child, especially after having a perfectly healthy son,” Green said. “It took me a long time to understand. I’m getting more comfortable with making it public. It’s important to get the word out that this exists and it’s horrible. It’s hard for someone to live with it.”
Green said she decided to document Peyton’s progress through an online journal at www.caringbridge.org/visit/peytongreen28.
“I’m totally willing to get the word out,” she said.
Green said 21 people have already committed to Wednesday’s blood drive and she’s hoping for more.
“(Blood drives) are so important for any disease that requires a blood transfusion, like sickle cell or thalassemia,” she said.
For more information about the disease and the foundation, visit dbafoundation.org.