The Unique Life of Mr.B
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Braeden's Beach and Bucket List...
How does one live with a Palliative Child like Braeden? Day by day. We try and search out the joy in the littlest and biggest of things. We have always tried to choose quality of life for Braeden vs quantity of life. B is in charge of his own timeline and we are blessed with enjoying the ride. It's not always a pretty or a happy life but it is one that is filled with unconditional and never-ending love.
Braeden is a 10 year old boy who has the brightest light shining within him and radiating out. He is joy and celebrates each day of his life as if it may unknowingly be his last.
Braeden (B) rushed into this world two months early on November 7, 2011. He spent his first 7 1/2 months at Alberta Children's Hospital and has continued to make frequent visits/stays there over the past 10+ years. Braeden finally received his ultra-rare genetic diagnosis at age 7. Our B is only 1 of 100 medical cases documented worldwide of Hajdu-Cheney Syndrome. Mr.B has survived Hydrops, Heart Surgeries, Strokes, Seizures, Sepsis and Meningitis, 37 Blood Transfusions, Pierre Robin Sequence, Chronic Lung disease, Stomach and Intestinal surgeries, polycystic kidneys, Hypotonia, CP and (unbelievably), much more.
Approximately 5 years ago we applied for a 'Wish' for Braeden through (what is now), Make-A-Wish. It was decided early on that Hawaii would be an ideal place to go for a Wish Trip. Braeden LOVES the ocean and he is at peace and relaxed when he is near the water. (Braeden has only been to the lower BC West Coast)
We have looked at many pictures of Hawaii over the past 5 years and he knows he wants to 'go there'. Amazingly enough twelve months ago B's immune system and health were finally at a point in which we felt confident to travel...then Covid-19.
Covid-19 has shaped all of our lives in many different ways. Among many other things, it also meant for us that any hopes of travel were dashed. Between the aggressive nature of this virus and B's many cormobidities, we along with Make-A-Wish, decided the risk was too high to travel. Wishes are generally asked to be granted within 5 years (and we've already had an extention).
Ironically, our last ICU stay was due to Coronavirus about 3 yrs ago. That plain old boring version of Coronavirus (common cold), not the -19, hit Braeden especially hard and it was scary. The number of times I have had to watch Braeden struggle to breathe was, by far, the scariest.
Why can't we just wait Covid-19 out and go later? While that hopefully is a possibility, another factor for us is that on top of everything else, is that Braeden has an unpredictable instability is his neck. Specifically, B's C2 vertebrae is reabsorbing (Osteolysis). Due to multiple (congenital), bone problems, B is not a candidate for spinal fusion surgery. Our current reality is that there are no current surgical treatments available anywhere in Canada for Braeden's level of complexity. The description the Neurosurgeon gave us is that B could "turn the wrong way in his sleep and that would be it". Every sneeze, bump or jostle can be scary if we let them.
So why the Go-Fund-Me? People have asked me how they can help and/or give them somewhere they may contribute. We may not be able to go to Hawaii BUT hopefully we can go West again this summer! It would be amazing to be able to Rent an RV (or such) and have a road trip to look back on. We want to continue to give Braeden JOY in as many differing ways that we can for whatever time we have.
**Braeden's story and/or updates can also be found on both FB and IG at 'The Unique Life of Mr.B'**
#theuniquelifeofmrb
Thanks for reading this part of our story!
Mr.B
Organizer
Lia Lousier
Organizer
Airdrie, AB