My life is a Journey...
Journey showing you how tuff he is.
A Huge Thank You to ALL
We have reached our goal because of the many generous donors who care about Journey and our family. Saying Thank you is simply not enough as your generosity has enabled up to focus on Journey's health instead of worrying about the car or the bills. You all made this possible and we will foever be greatful your kindness has touched our hearts and our soul.
Journey doing a happy dance.
Our medical stroy summed up:
For those who don't know our story my husband Doug Dickson and my Son Journey Dickson both suffer from a rare blood disorder only 700 people have in the world called Diamond Blackfan Anemia or DBA for short. It is bone marrow failure of the red cells of which there is no cure and carries many other congenital defects aswell.
Our son Journey requires packed red cell blood transfusions every 2/3 weeks to stay alive as well as IVIG therapy for his immune system.
Journey also suffers from complex heart issues which have required several open heart surgeries "3 open and 2 procedures so far" with more to come as he gets older, along with that he has global development delay and is G tube fed but that doesnt stop him from being a bright and happy boy as you can see from the video above!
My husband is on steroids so doesn't need transfusions but did go through years of transfusions himself but that doesnt make him healthy by any means he has a lot of side effects from the prednisone. He also suffers multiple tumours, sleep disorder and mental health issues which make everyday leaving hard.
Journey and Doug are in and out of the hospital and both have regular appointments they attaend on a weekly to bi weekly basis.
Journey with Paul Brandt 
The lead up to why we were seeking help:
Just before Christmas my husband suffered a small TIA Stroke at the age of 30 because of that he had to be admitted to day hospital for 4 weeks due to acute mental distress. He drove back and fourth to hospital daily for the 4 weeks not including the appointments him and my son already had.
Although my husband is not able to work becasue of his disabilities that did not stop him from trying to make a differnce for people with rare conditions he started a home based mobile game company to say the least which would make games to bring awareness
and donations to rare conditions.
He successfully developed and launched before his downfall a game for our son called Blood Drop Pop it is based off DBA, has real Calgary landmarks, brings blood donation awareness and best of all has our son in it. It is FREE to download on apple + android but all in app proceeds will be benifiting the Alberta Childrens Hospital.
Blood Drop Pop - Pop for a CURE
Before my husbands TIA he had plans to make a few more games for chairty including cancer, blood donation and other illnesses but do to the financial hardships he had to sell his computer that he used to developed. In the future he hopes to continue with these games and keep spreading awareness for different causes.
After Christmas our son Journey had day surgery to fix his IVAD (medical IV). He has had this procedure a few times with no issue but this time something went amiss and they ended up having to put his fixed IVAD in a dangerous place.
The surgeon came out and warned me the new IVAD is right in his heart valve. This is now a big concern for his cardiologist as it can cause cardiac arrhythmias and now instead of not having to worry about seeing his cardiologist for another 8 months we need to see her very soon to go over some iheart issueshis IVAD may casue.
Journey before IVAD Surgery.
On Jan 11th we were called by Journeys hematology nurse she informed us we needed to be seen ASAP.
We were told some very scary news Jounreys life is in grave danger as his current treatment (exjade) for iron overload is not working well enough even on the highest safe dose he can take.
They said he needs to start a new med on top of the exjade. They told me if we don't start this new medication (desferal) right away we will not have a Journey, so they were pretty much telling me it is a life or death situation in a nice way.
Usually people use his mediation at night time for 12 hours a night but Journeys iron is so dangerously high over 4000+ in his heart and over 25 in his liver at a level of 30 adults dont usually survive and we know this first hand as this is how his grandpa passed away last year.
Journey needs to be on a high dose 24 hours a day 7 days a week for a minimum of 6 months. The oncology nurse who came to train us for his pump said in her 15 years of being a nurse she has only ever had to train a handful of patients as usually everything is just done in clinic but they have never had someone on 24/7 medication like Journey so we needed to learn how to use all the equipment.
Journey has already lost his eyesight to exjade and one of the big side effects of desferal is hearing loss so now we will have to deal with both sight and hearing loss but at this point we have no other option. His life is more important than his eyesight and hearing.
Journey getting his packed red cells and IVIG.
Journey & Doug are going to be at the hospital and or doctors on a weekly basis for the next 6 months, that is not including any of the other appointments we have. A vehicle is not a luxury it is a necessity and without it there is no way we can to get treatment. So we are asking everyone to please if you can donate if not please share our story, the more shares the better chance we have at reaching our goal.
Playing a board game as a family.
We want to let everyone know if they want to continue to see how Journey is doing you can follow his story on Twitter @DBAJourney his facebook page DBA Strong Journey and his instagram dbajourney.
Journey in the ICIU.
We greatly appreciate everyone's help.
Sincerely,
The Dickson Family
Doug, Coriena, Patsy, Brock, Hope & Journey
