Former SickKids kid plans to leave legacy
GUEST BLOG – Maria-Jose Bouey, SickKids Foundation Receptionist
My name is Maria-Jose and I am alive today because of SickKids. Time and time again, the incredible, loving and dedicated team at SickKids has given me a fighting chance at life – and I’m determined to give back in every way possible.
I was born in Santiago, Chile on December 31, 1987. During my mother’s pregnancy, pre-natal ultrasounds indicated that I was going to be born with multiple medical complications. From scarring on various abdominal organs, undeveloped organs and reflux in the kidneys; all indicated that I would be a high risk birth.
At birth I was diagnosed with a rare congenital abnormality called Cloacal Exstrophy. Typically this is when the abdominal wall is open exposing the peritoneal sac. As had previously been seen during pre-natal ultrasounds, my case was different. My abdomen was intact but my lower spine, digestive system and urinary system had various complications. My father took to the city, on New Year’s Eve no less, to find a priest to both baptize and bless me prior to undergoing what would mark the first of many surgeries.
After a handful of costly yet life-saving surgeries, doctors advised my parents that, given my father’s education and Canadian citizenship, The Hospital for Sick Children (SickKids) was my best chance at life-saving care. The choice was clear and my parents left the only place they knew as home and relocated to Toronto.
"My life goal is to change the world through acts of kindness."
I was eight months old when we moved to Toronto. We went directly to SickKids where we were welcomed with hope for a fighting chance at life. My journey at SickKids continued until I was 18-years-old. During those 18 years, I underwent over 50 major surgeries including bladder augmentation, various urinary and digestive ostomy surgeries, and spinal surgery. Not to mention countless hours and hundreds of treatments, procedures and minor surgeries.
In my preteens, my kidneys failed and I began dialysis treatment three days a week for four to six hour sessions. Once again my life was at risk and my parents stepped forward in hopes of finding that life-saving chance.
It turned out my mother was that chance. On April 19, 2001, my mother and I were rolled into joint operating rooms and she gave me the gift of life: a kidney transplant.
Not long ago, I described the feeling at SickKids to a friend as ‘an unspoken hum’. Like the wind, you may not see it but you feel it. It is in every IV poll, operating room and caregiver that you feel this unspoken hum of care, compassion and most of all, the fight for life. It is real. And it is magical.
I have faced physical pains. I have been a medical mystery. My family and I have faced the realities of that elephant in the room, that elephant being death. I have been blessed with the most love, care and support that one could ever dream of. My parents have been my pillars of strength every moment along the way. Their love has gone beyond what one could ever imagine. Through their dedication to my health and wellbeing, they’ve shown me time after time that my life is more important to them than anything in the world. I say without a doubt that I would not be here today, nor would I be half the person I am, without my pillars.
Along with my parents, my extended family of fellow patients, volunteers, staff, nurses and surgeons at SickKids have all provided unwavering support. Every doctor, nurse and staff member gave me my chance at life. I always knew that I was not only receiving amazing medical care, but more specifically, life-saving care in a hospital that believed in putting my life first.
At the age of 18, the time came to “graduate” from SickKids, move on to adult care and begin making adult decisions. As a frequent flyer in the medical world, even at a young age, one has discussions and plans in place should something happen. Details as to who would get my dogs, how should my body and organs be donated, and if the difficult moment came, that SickKids must be included as a beneficiary of my estate.
Most people my age probably don’t spend much time contemplating their legacies. Well, I have. I want to leave a legacy of determination to overcome the odds – and a compassion for every child facing those battles that I once faced.
My life goal is to change the world through acts of kindness. Perhaps I can set an example to others. Perhaps I can achieve good for people who are in pain. Perhaps I can let someone receive the love from me that I received so many times. Along with battles come blessings. I believe that love and hope truly make the world go round. Though my body may have its limitations, and my battles are far from over, I feel surrounded by blessings and can only hope to share as much as I can with those facing their own battles and needing their own blessings.
Anyone can make a gift in their will. Maria-Jose had the forethought to include a gift in her will and she hopes that others will consider doing the same. Remembering SickKids in your will is a meaningful way to help fund medical discoveries and breakthroughs and create a healthy society for future generations of children. No matter how big or small, all legacy gifts make a difference by giving health and hope to sick children and their families today and for generations to come. To learn how you can include SickKids Foundation as a beneficiary in your will, please visit our Gift & Estate Planning webpage.
