A True HeroILC Virtual Wall of Gratitude Heroes and Pillars of Hope and Inspiration: 

Who in your life is a Hero that is a Pillar of Hope and Inspiration to you?  Send us your story as a nomination for recognition for that special person (Mom, Dad, Husband, Wife, Friend, Teach, Doctor) in your life and we’ll post it on our virtual wall of gratitude.  

Please include the nominee’s contact information and we will send them a personalized card in recognition their being “A Pillar of Hope and Inspiration to you!” with a link to your nomination on our website.

Oakville Community FoundationThe Oakville Community Foundation is a champion for chronic pain and hero as they have helped ILC expand our reach.  Knowing that children, youth and families are suffering with under-serviced, misunderstood chronic pain is heart-wrenching.  With professionally skilled client navigators that have lived experience, where they volunteer their time; and volunteers who help to raise awareness within communities, hope is inspired.  With financial support from the Oakville Community Foundation volunteers have helped to expand and organize the annual difficult to diagnose chronic pain diseases: Ehlers-Danlos Syndrome conference with Canadian Medical Education accreditation through McMaster University to give support and hope to all stakeholders. Thank you!

By Rebecca Mills

Kris has been the glue that has silently kept us all together.  Through the emotional turmoil of worrying, yet being the provider, strong shoulder, the behind the scenes but integral role of keeping things together, he is my rock.

By Sarah Leach:

Sometimes I find it surprisingly hard to be grateful.  Not because I don’t appreciate how I am being supported and cared for, but because really thinking about it makes me focus on things I prefer not to dwell on too much – the fact that I can’t work anymore and have lost so much, that I am dependent in ways I could never have imagined, that were I alone, I would be living in desperate poverty… 

When we first started dating I was 16 and my husband 17.  I never expected we would end up married with two fantastic kids, and I am sure we both never expected that our lives together would be one long episode of Mystery Diagnosis.  We expected to have normal lives with normal gripes, and instead we have faced tremendous challenges that have felt overwhelming at times, for both of us. 

But years ago my husband told me he was my Samwise Gamgee, and I was his Frodo.  Not being that particular brand of nerd I didn’t really get what he was saying, but after listening to him read those books to our son, I now appreciate what he was telling me, and realize how romantic and truthful it is.  Everyone needs a Samwise, and I am so lucky to have found mine.  Thank you, Chris!

By Brittany Crichton:

Brooklyn Mills is an intelligent, beautiful kind hearted girl, and she will forever be my hero. I don’t think she always realizes it but Brooklyn is the reason most of us were diagnosed and able to get help. She is definitely the reason The ILC was started and why there is a peer support group. I truly believe that Brooklyn was an angel sent down from heaven to touch and help so many people and she is doing just that. It pains me to see that Brooklyn still struggles and Brooklyn still needs so much more help and at time she does not see the light, but I hope when she looks into all of our eyes she sees the light because she is the reason we all got help. I try my hardest to live up to Brooklyn’s footsteps, I went with Katie Bailey to help her get diagnosed, I am trying to help as many people as I can, because Brooklyn would want that, when she is not well enough to help. Brooklyn is my hero because without her I would still be the lost girl who had no nope and no help, so thank you Brooklyn for not only being my best friend, but for being my Hero.

By Brittany Crichton:

A hero is someone who puts others before themselves, gives with all their hearts and always looks for the positive in every situation. My mom is definitely my hero and as my Aunty Pam calls her someone who poops rainbows. In the times I have been sick and having surgeries my mom has constantly been at my side, whether it was a shoulder to cry on, making a joke, or just sitting in silence. She has given her whole life to me, and many special occasions. She sat by my hospital bedside on her 50th birthday, she has spent many sleepless nights by my hospital bed, only to get up and go to work the next day. She gave her home up for a night to help make a special girl Autumn with EDS have a special birthday party. My mom has always put others before herself, and she has never given up hope that one day there will be something out there to help us, whether it is a pain program, a cure, or a peer support network. My mom has had to deal with some of the hardest things life throws at you from a sick child, to her mother passing at a young age, to at the age of 8 having to be an adult and help raise a family, but she has never complained and she considers herself blessed. This is why she is my greatest Hero.

From Brittany Crichton:

Dr. Ivan Wong is an amazing surgeon, and Doctor. Being a great Doctor doesn’t just mean you are good at what you do, that is only a small aspect of it. Being a good doctor is about the quality and quantity of time that you give to each patient. Dr. Wong is one of my hero’s because when I was referred to him, I was told I was a lost cause, but through many surgeries he never gave up hope that one day he would be able to fix and help. He went to Spain to learn how to do a surgery, and how to do it arthroscopically so it would be less of a recovery time. He sits next to you at every appointment and makes you feel at home and comfortable. He makes me feel safe, and that is how a great doctor should make you feel. Dr. Wong is one of my heroes because he never gave up hope that one day something could help.

From Brittany Crichton:

Dr. Henderson is a hero to us all, not only for saving most of our lives, but for recognizing when something was wrong. In every meeting he gives you a hug and makes you feel safe and that he truly cares. Dr. Henderson gave me my life back, at a time when I needed that hope the most. He is not only a brilliant surgeon but he is one of the kindest hearted people that I have ever met, and that is why he is one of my hero.

From Olivia Smeenk:

My hero, Barry Wheeler works in the Student Accessibility Services (SAS) department at the University of Guelph, specializing in student cases that have chronic, long term conditions. Barry is such a huge inspiration, always smiling and helping to give me strategies and provide support, all the while managing his own set of issues.  Barry has made it possible for me, and many other students to go to University and achieve a fair and accommodating education. If it weren’t for Barry, and the SAS department at the University of Guelph, achieving a degree would be out of reach for me and many others.  Thank you, Barry!

From Madison Zylstra:

My mom has always been here for me. She is my #1 supporter she is always willing to advocate for me. She has spent hours and hours driving me from appointment to appointment and has never once complained. I know she will always be hear for me. I love her with all my heart XOX

From Allison Estabrooks:

For years I ran to my mom for support she was there for every doctors appointment, every blood draw and emergency visit. She fought for me and worked beyond hard to get me a diagnosis. For that I am eternally grateful, however she has passed the torch onto my loving husband. Chris is my rock and my strength when I’m ready to give up. He accepts me and my limitations yet he always pushes me that extra little bit. Without him and his loving devotion and selflessness we wouldn’t have our beautiful daughter. He was my biggest supporter, care giver and motivational speaker for 8 months. I love this man more than words can express and I am thankful I have him by my side on this journey called life.

I sometimes get over whelmed by daily struggles. When I’m just too tired for anything else to go wrong or pop up. Chris always has a way or keeping me going one step at a time. When I’m caught up in all my issues and feeling less than useful I think I take him for granted.

More than anyone in the world he makes me feel appreciated loved accepted and whole.

Add your story here:  Send us your story and we’ll add to the Wall @ karol@theilcfoundation.org

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    1. Simcoe/York Ehlers-Danlos Syndrome Peer Support Group Meeting

      October 21, 2017 @ 12:00 pm - 2:00 pm
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      November 4, 2017 - November 5, 2017
    3. Ontario Peer Support Meeting – Toronto, Ontario

      November 4, 2017 @ 12:00 pm - 3:00 pm
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