CALGARY – A local family is sharing their story hoping it will encourage more people to give blood.
Journey Dickson suffers from a heart defect and a rare blood disease called diamond blackfan anaemia. The condition is so rare only 700 people around the world suffer from it.
The disease is genetic. Journey’s father Doug also has the disease, which means the patient’s bone marrow doesn’t produce enough red blood cells that there is a need for constant blood transfusions.
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“He was diagnosed at like 30 weeks. His haemoglobin was low and she needed a transfusion in the womb. He was born at 33 weeks,” says Doug.
Unlike his son, Doug was diagnosed at 20 years old. He has been able to control his anaemia with steroids but it’s not known if that approach will help Journey as well.
Currently, every time Journey’s red blood cell count is too low he’s had to have a blood transfusion.
If not, he will continue to rely on nearly weekly blood transfusions. So far, he’s had 12 in the four months he’s been alive.
“We need basically blood donors and getting blood is what keeps me and him and people like us alive,” says Doug.
Because the disease is so rare, very little research is being done and support services are scarce.
To learn more about diamond blackfan anemia, click here.
You can also follow Journey Dick’s blog at www.caringbridge.org.
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