Life with a blood disorder
Ten-year-old Ezra and his mum Amanda share what life can be like with a blood disorder. They also have great advice about staying curious rather than making comments.
What would your perfect day look like?
Ezra: I love nice sunny days playing outside and having fun. I really like drawing, playing video games, and practicing my basketball skills.
What is the condition you live with?
Ezra: I was born with Diamond Blackfan Anemia (DBA). It's a bone marrow disorder that depletes my red blood cell counts and causes me to not make new red blood cells. When my blood levels are low, I feel very tired and sore. I don't have enough energy to play or leave the house. My body forces me to rest.
What is it like to have this blood disorder?
Ezra: You have to make sure you eat healthy, drink lots of water, and sleep well. This helps me feel better. I sometimes get headaches and body aches, which can feel hard and unfair. Getting regular blood work, even when you’re feeling fine, and having to get transfusions when you’re low is hard on the body and the mind.
What is it like as a caregiver?
Amanda: Because this disorder is so rare, there is not a lot of information for us to follow or reflect on. We spent the first five years following medical protocols, but things never seemed to get easier. We would spend 200 out of 365 days in the year in the hospital or clinic, with constant blood withdrawals every week. Sometimes multiple times a day. Because of his medications, Ezra was considered immunosuppressive and often got sick and needed a transfusion following any illness.
For the last five years, we have been able to stop medications, increase vitamins and supplement intake, and increase body awareness and advocacy. We only require one transfusion per year with no BMT therapy on site for us yet.
Ezra has already outlived most of the children with this disorder. The hardest part for me, as a mother, is watching the world “pick” at him and the comments they make, sometimes directly to him.
What do you wish other people understood about blood disorders?
Ezra: I wish people would ask me how I’m feeling rather than tell me how small I am.
Amanda: If someone has a certain blood disorder, you can expect them to be fragile and tiny compared to healthy people.
What has helped you?
Amanda: Advocating, spirituality, and family has helped us to thrive. Asking questions and asking for help goes a long way. There is help out there.
How can other people help?
Ezra: Ask any questions, but don’t make comments. They hurt, even if you didn’t mean for it to hurt.
What helps you to feel better when you’re having a bad day?
Ezra: Family movie nights and resting in bed when my blood is low. I’m lucky to have been granted a “stay at home” Make-A-Wish during the Covid lockdown and now I have a room full of screens and video games. This helps take my mind off not feeling well.
How has WCK helped you?
Ezra: By setting up lots of fun games and meeting new friends at Hangouts and City Camp. We don’t talk about our illnesses, but we know we all have something special inside us. I really liked getting WCK jammies for my whole family. It made me feel so good that I could give back to them for all they have done for me.
What is one thing you wish for?
Ezra: That everything was Mario-themed and animated! I don’t wish I didn’t have DBA, because it is a part of my story and earth-side journey.
What can people reading this blog do to help?
Amanda: It helps when they understand that disability is not always physical or “seen”. Please don’t make judgments or comments, but rather ask questions out of curiosity. Spread the news about meeting a person who doesn’t produce blood, and donate blood whenever possible.
Get involved!
You can help to raise awareness of blood disorders.
- Think of a friend to tell.
- Share this blog with them (use the url at the top).
- Spread the word on your social media!