Transfusions every 21 days help Daniel cope with genetic blood disorder
One pint of blood every 21days, that’s what it takes for Daniel Wendler to giggle, wiggle and ride bikes like healthy six-year-old boys. His family is grateful for the blood donors who make it possible. Daniel has a rare genetic disorder called beta thalassemia major. His red blood cells lack a protein that helps carry oxygen through his body. The disorder is passed down through a person’s parents.
“Where Daniel was born in China, there was not enough of a supply of safe blood for him to get the level of care he receives now,” said Allison Wendler, Daniel’s mom. “Two days before he gets transfused, we take him to get blood drawn so the lab can match the blood he will receive.”
When patients receive blood often, it is important to find specially matched blood. Even a person with the same blood type might have other proteins in the blood that are incompatible with the patient.
Allison Wendler says it is a gift for Daniel to receive fresh, properly matched blood every time. She knows that children in many other countries do not have this. Allison says the average person does not understand how essential the blood is for her son’s and others’ lives. With less frequent transfusions, she says Daniel’s bones could hollow out because the bone marrow would be working overtime. The disorder can also affect a patient’s heart and other organs.
Daniel gets red cells – called ‘packed red blood cells’ in hospital lingo. Right now he gets one unit (about one pint) and at some point his mother says he will get three units each time. His mother thinks about the people she will never be able to thank.
“We’re very thankful. We pray for those taking time to donate that day, we’re just really thankful. Without this Daniel wouldn’t be a healthy boy like your kids. His life would be shortened and the quality would be greatly declined.”
Wendler admits she is a ‘big chicken’ and had only donated blood once or twice, until she met Daniel. Now, she donates blood and her family has hosted two blood drives at their church, to raise awareness of the necessity for blood donors. Allison markets the blood drives on Facebook, passes out postcards and emails donors before the date. She says now that her friends know someone who benefits from blood donations, they are more eager to give, even during the pandemic.
“We did one in May [2020] and had 50 or 60 donors who wanted to see each other face to face for the first time in a long time,” Wendler said. “The buses came out and spent the day with us. I dressed Daniel up [like a vampire], passed out Gatorade in blood bags.”
Wendler took a tour of Carter BloodCare’s headquarters in Bedford last year before the COVID-19 pandemic halted that practice. Allison contacted the blood center because she wanted to understand more about where the blood comes from – the blood that improves her son’s health. Allison said it is pretty amazing to see the number of blood bags coming into the blood center. She said it drives home the quantity of what is required to keep the supply going. Carter BloodCare needs to register about 1000 donors each day to maintain a strong blood supply for the community. If you have a story to tell about blood donation or about receiving a blood transfusion, let us know at TellUsYourStory@carterbloodcare.org