Advocating for a national childhood cancer strategy – Helena’s Hope
My name is Helena Kirk and I am 12 years old. I was diagnosed with cancer at three and a half and became a patient at SickKids. I received 841 days of cancer treatment. I am also a cancer survivor. I love SickKids, it became like my second home with the nurses, doctors, staff and clowns all being so kind and nice to me.
I have been doing work for childhood cancer causes for eight years now, speaking to audiences of hundreds, sometimes even thousands. The first time I spoke publicly it was on the front lawn of SickKids. It was so exciting! I got to be on TV and I was really happy even though I was very sick from chemo at the time.
Fast forward to 2017 when I was asked to be an ambassador for SickKids. I had the opportunity to go to Ottawa and Florida where I met other kids who had accessed care at North American Paediatric Hospitals. I was inspired and found that I really wanted to share my story and my friend’s stories. I wanted to be a voice for those who were too sick or too shy to speak for themselves. Some of my friends are still fighting cancer.
I was determined I could make a difference because I so desperately wanted my friends to survive cancer like I did. That meant they needed fast access to trials and treatments. I wanted the leaders of our country to understand the problems they had the power to fix. I wanted to fight for my friends who were in hospital and too sick to fight for themselves.
I had the privilege of meeting with the Prime Minister, Minister of Health, Minister of Science and MPs who were all eager to hear my story. It was the spark that started me on a journey of advocating our federal government for funding and support to find more pathways for Canadian children to have access to trials and treatments and streamlining health approval systems in Canada. I wanted equal access for all kids, no matter where they live in Canada and regardless of their family’s financial position.
That spark spread like wildfire - and there is now a lot of momentum for change.
There are currently over 100 families from eight Provinces who have joined my efforts. They are writing letters and meeting with their MPs. In April, we made the decision to formally call our team Helena’s Hope. The proposal that I gave the Minister of Health has 30 pediatric oncology experts (including a few from SickKids!), 31 cancer organizations endorsing it and the National media has done a lot of positive coverage. Also, my statement on parliament Hill (video) and at a meeting with Health Canada (print) and the list of all the federal MPs and Ministers supporting our efforts are all on HelenasHope.com.
We know that by working together we can do more!
There are a few things I would like clinicians, researchers and leaders of our country and cancer organizations to know:
- If we can get the smartest people in the country working together on a comprehensive National plan we can improve the lives of kids with cancer.
- It is also important through this process to listen to the voices of the kids, teens, young adults and families – we have a lot of wisdom, we are strong, we are brave and we can help find solutions that matter.
What I can tell you is that the 100+ families in Helena’s Hope joined me because they want their stories heard and they are ready to roll up their sleeves and be part of the solution.
I am grateful - I survived cancer. I am lucky I was treated at SickKids - the best children’s hospital in the world. I am blessed to live in Canada – the best country in the world.
I am determined to continue to advocate for kids with cancer all across Canada.