The Inspiration Behind Team Caius
The following is a contribution from a wonderful human being and family friend, Dr. Muriel Brackstone. Despite her many talents and her unbelievably busy schedule, the last time Caius was in hospital and we got the news of his worsening condition, Muriel took the time to make something special for Caius and our family. She made us feel like we were not alone, that he was not alone. On the day of his return home, she was there, with yellow (his favourite colour) T-shirts, signed by all his classmates and teacher, a frame with picture of them all together wearing the same shirts, and a place for us to put our image to hang in his room. Please enjoy this entry as good news to share with your friends and families. There is never enough.
As often is the case for working parents, my friend group expanded to include Caius’ parents, Cleito and Darren, when my son and Caius met as classmates and became fast friends. They are like peas in a pod and Caius is to me an extension of my son. I honestly feel blessed to have them in my life.
As a physician, I understood what a diagnosis of alpha-1 antitrypsin deficiency would mean in terms of eventual liver transplantation, but could only imagine the agonizing journey of hoping, waiting and worrying for his parents.
I watched his parents devote every ounce of energy into optimizing his diet and working so hard to give him every opportunity to have typical childhood experiences in spite of all his medications, limitations, and appointments.
When his condition worsened and it was time to list him for transplant, I wanted Caius to feel the immediate support of his classmates and wanted to create a ‘Team Caius’ community. I wanted to help with transitioning from the initial overwhelming phase to the ‘we’ve got this’ phase of his journey.
There was so little I could do but I did know his favourite colour (yellow, obviously!!) and lego, so the t-shirt idea with Team Caius and all the classmate signatures came together. It’s obvious from the outpouring support that many feel as I do.
I guess I would describe myself as an optimist because to me, the statistic that 1 in 5 applicants could be a potential match for Caius is so promising. At the outset, I had decided that I would donate a lobe of liver to Caius, absolutely and without reservation if I were a match. Unfortunately, I am not, but someone else will get that privilege of saving a life.
To me, a surgery is such a minor thing to go through to provide that gift and it’s clear reading testimonials from those who have done it, that the personal gratification from knowing you saved a life and gave someone their childhood and future back, is a life-long benefit to the donor. For me, it was important for his parents to know that there was a community of willing donors, supporters and extended ‘family’ out there.
I wanted my kids to know that doing something for someone else, even if it cost you something, was the way to best live life.
Like everyone, I’m anxious to see Caius fully recovered and back to living the life of every 11 year-old boy.
With all my love,
Muriel Brackstone
