Excerpt from Alison’s speech made at the “THAT’S WHAT FRIENDS ARE FOR” Fundraiser on April 24, 2004
Now I ask God why not me?
I decided that instead of using my sickness as an excuse or reason to be angry or bitter with the world, I would choose to look at it as an opportunity: to show others, but more importantly, to show myself that I can beat it!
There were many times when doctors told my parents that I wouldn’t make it; I mean one doctor even told me to my face I was dying, but I wouldn’t accept that. I wrote that doctor a card and thanked her for making it easier for me to prove her wrong and you know what —to this day that doctor is one of my greatest friends. It just goes to show that a little hope and faith can go a long way.
A special friend of mine once told me that “when you change the way you look at things the things you look at change.” I love that saying because it’s so true. If I surrounded myself with the intention that I was completely healthy and remained as positive as possible, then I would notice that that is the type of energy I would attract and good things would come my way. Like today for example – I couldn’t have asked for more. I believe there is no such thing as coincidence and that everything happens for a reason, which may not be clear to us now, but will be discovered when the time is right. I’m not saying being sick was easy — it was the hardest year of all our lives and something none of us were prepared for. God-willing, we all got through it as strong as ever and all with the help of countless numbers of family and friends like you, for which I am eternally grateful.
“I like to think of life as a Ferris wheel, full of ups and downs. Whenever one side is down, there is always another side going up and it doesn’t really matter which side you’re on because as we can see here, you have family and friends on all sides.”
Stephanie has been a patient at SickKids since she was one hour old. She was born with a rare condition called omphalocele, causing her organs to grow on the outside of her body. Over the years she developed several other conditions, including intestinal failure, and has been in and out of the hospital more times than she can remember.
In her short eight years, Stephanie has undergone 13 major surgeries and over 75 invasive procedures. The multiple conditions she suffers have left her with acute and chronic pain making it very difficult to do even the simplest tasks, such as putting on her shoes. The pain is sometimes so severe that the only thing Stephanie can do is curl up and sob.
Dr. Wales, the Director of the Group for the Improvement of Intestinal Function and Treatment (GIFT), and his team are doing everything in their power to improve the clinical care of children like Stephanie. The Claytons are thankful to the dedicated staff at SickKids, who have been taking care of their daughter and making sure the whole family feels safe and comfortable.
Dr. Wales and the GIFT Team have been our hope for Stephanie: our hope to live outside of the hospital; to live like a “regular” 6 year old girl. Dr. Wales believes in Stephanie. He pushed forward even when we as her parents were resistant. He wants a better life for Stephanie. He saw a future and after having spent over a year in hospital he was insistent we reach it. Many days, the light at the end of the tunnel was very dim but with a smile, words of encouragement and “The Glass is Half Full” attitude, Dr. Wales plugged forward. Dr. Wales goes above and beyond. He takes the time to understand our family as a whole. He has invested his time, energy and patience in not only Stephanie, but every member of our family. Dr. Wales is a shining example of how family centered care can work. Stephanie is our fighter and Dr. Wales is hers. Without his true dedication and passion for “his kids” (GIFT) I do not know what Stephanie’s live would be like today. Thank you Dr. Wales for believing in Stephanie.
I would like to tell you a story about a hero. It is the life story of Alison Ann De Silva.
We think of heroes as having strength, courage and special powers. True to form, Alison had all of these. She had the strength to battle a debilitating and rare disease. She had the courage to bare this burden with a smile. She had the power to capture our hearts.
…Robbed of her innocent youth, Alison had to grow up before her time. This, I can tell you first hand, was a disease not for the squeamish or weak willed. Alison was hooked up to a myriad of machines, her most basic functions monitored around the clock. Privacy for this young woman was a luxury. The simple pleasure of tasting a slice of pizza, a favourite of Ally’s, or eating a home cooked meal was not an option. Hope, the doctors told us, was not a reasonable expectation. And yet despite these hurdles, despite the odds, despite the machines and despite the sorriness of the situation, somehow her radiant beauty shone through. Through sheer determination, Alison pressed forward.
…Alison captured the hearts, not only of friends and family, but also of the medical community that cared for her. One of her nurses told me she has never seen a patient and family go through so much with such humility and dignity.
Upon her passing, an interdisciplinary team at Toronto General Hospital convened a meeting to openly discuss Alison and the impact she had on them. What made her so different? Why was she so special? Doctors, nurses and respiratory therapists – professionals who have seen it all before and who are normally stoic about such matters – openly wept around her bedside as Ally took her last breath.
…Alison endured her illness with dignity and without complaint. Though burdened by her existential struggle, Alison never lost her faith. She never resented God for putting her through her ordeal.
Although armed with strength, courage and wisdom, Alison’s is truly a story and legacy of love. This is what she taught us. This is the lesson to be learned. Most of us will never be tested like Ally, nor blessed with Alison’s virtues. But we can all endeavour, we can all strive to love like Alison; to think of others before ourselves, to change for the better the world in which we live.
Our beloved Alison, you will be dearly missed and you will never be forgotten.
-Delivered by Alison’s cousin, Shaun Saldanha