Diamond Blackfan Anemia or (DBA) is a rare orphaned blood disorder affecting the red blood cells. People are usually diagnosed with DBA before the age of 2 and in very rare cases some are diagnosed in the early adult years or in utero. People affected by DBA produce little to no red blood cells requiring them to have life saving blood transfusions every couple of weeks in most cases, in some cases patients can go on cortisone steroid therapy (prednisone) to prolong or stop required blood transfusions but this does not work for all patients and comes with life long complications and risks. Currently there are less than 1000 people worldwide with DBA.
Currently there is no "cure" for DBA the only option is a bone marrow transplant but that is extremely risky and not done unless there is no other option because it has a high mortality rate and low rate of success.
When I was just 20 years old with my whole life ahead of me I ended up getting very sick over a few weeks time it seemed to be getting worse I was pallor (white) in my face and lips, I collapsed in the doctors office and was rushed to emergency via ambulance. First thing they did was a CBC (blood test) and found out my hemoglobin (blood level) was a record breaking low of 23 (normal is 150-180). That day I was was hospitalized and given many blood transfusions to save my life. They did several tests but could never figure out what was wrong with me as I had no family history of any sickness on my mothers side and had not seen or known of the whereabouts of my father Doug Dickson Sr. since I was a young child. I continued to receive blood transfusions every 2 weeks and hoped one day they would figure out what I had almost died from and been suffering from ever since. On the right side is a picture of me when I was first hospitalized.
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It wasn't until a few years later when I was getting another transfusion that I was asked by the clerk what my full name and date of birth was as she had someone with the exact same name. I provided her with the info and left a note with my phone number hoping that it was my father and that I could finally get some answers I have been looking for. By fate it turned out it turned out that the other Doug Dickson was in fact my biological father. We decided to meet up the next day my father then explained what he had and felt horrible that it has passed onto me. A few days later my doctors finally diagnosed me with Diamond Blackfan Anemia (DBA) at the age of 20. On the right is a picture of my father holding my son Journey Christmas 2011.
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My wife and I chose to have children knowing that there was a chance our children might get DBA as well. However we had two healthy children Brock and Hope who were full of energy and as healthy as could be. Then in 2010 we had a surprise pregnancy and all went well until my wife was 31 weeks gestation. Her ultrasound was taking much longer than our past two children and we knew something was wrong so we started getting worried then they brought in the cardiologist, She told us our baby was very sick and had a heart condition called Tetroloy of Fallot (TOF), My wife needed to be admitted to the hospital asap our unborn child was in heart failure and his hemoglobin looked to be extremely low. We went to the hospital and they ended up needing to give our unborn baby a blood transfusion his hemoglobin was only 25 (normal 180+) He was diagnosed that day with DBA & TOF that day and that was the day we knew his name would be Journey because we knew his life would be a Journey. One week later they needed to do another blood transfusion but this time they accidentally hit something and my wife went into labor Journey was born via C-Section. They warned us that Journey would probably be born blue due to his heart condition and that he may not be moving and not to worry but he was born pink screaming and angry at the world he was born DBA Strong.
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My father recently passed away of DBA in 2016 at the age of 63 he was the oldest person to date living with DBA. I myself still suffers from DBA and although I responds to the steroid therapy (I no longer need transfusions) I have a lot of long term side effects from being on this therapy for so long but through it all I also remain DBA Strong.
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Our youngest son is Journey is now 5 years old is one of the most severely affected patient to date we know of affected with DBA requiring him to have blood transfusions every two weeks. He has had 5 open heart surgeries to fix his TOF he also suffers from a lot of complications of DBA including but not limited to feeding issues, complex cardiac disease, Aase syndrome & developmental disabilities, central sleep apnea & severe iron overload. Journey goes through a lot on a daily basis medical wise but he remains DBA Strong.
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I have decided to name my business after DBA in loving memory of my father and in living memory of my son Journey Dickson. Our hope in creating this business is to be able to offer funding to help the Alberta Children's Hospital and the DBA Canada foundation as both these charities really put the funding to good use.