For our latest Charitable Choices post we spoke with Andrea Haefele who is a mom, wife, teacher, advocate and founder of mombehindthelabel.com about her experience with Holland Bloorview and involvement with the Capes for Kids fundraiser which raises money to support research and critical hospital programs and services.
Describe your charity/non-profit in a few sentences.
Holland Bloorview Kids Rehabilitation Hospital is a top Canadian research hospital that serves over 7,500 families annually. Their mission is to create a world of possibilities by supporting children and youth living with disability, medical complexity, illness and injury.
Capes for Kids is their annual fundraising campaign which raises money to support research and critical hospital programs and services.
What problem does it aim to solve?
My family is proud to be part of the Holland Bloorview community, as we are also dedicated to helping other families build resilience to overcome challenges that life brings. My daughter Bella is a 10-year-old girl who has a smile that can light up the world. She is an ambassador for Holland Bloorview and the Capes for Kids campaign – our whole family aims to create a healthy dialogue to see the positive in all of our differences. We hope to inspire others to recognize their blind spots and to look beyond labels because we are human…wonderfully human.
When did you start/join it?
Bella was diagnosed with Global Developmental Delay at 12 months and at age three she was diagnosed with sever autism spectrum disorder. During this time she was attending Holland Bloorview’s Play and Learn nursery school along with receiving early intervention services at Holland Bloorview Kids Rehabilitation Hospital. In 2012 we began our journey to becoming part of the Holland Bloorview family. We didn’t know what to expect with Bella’s growth and development and what her future would look like. At the age of six, she was diagnosed with Pitt Hopkins Syndrome, a rare genetic condition that is characterized by intellectual disability and developmental delay, breathing problems, recurrent seizures and distinctive facial features. Our journey in the world of disabilities was now taking a new turn with unexpected bumps and slippery slopes.
This year we have decided to share our story through the Capes for Kids campaign as it is a great way to not only bring awareness to the community of families with disabilities, but it is also a reminder to myself that raising a child with disabilities and going through the intricacies of the life challenges it comes with, requires a happy soul that shines and radiates to everyone around.
What made you want to get involved?
Bella wanted to get involved with the Capes for Kids campaign to bring awareness that people with disabilities are people first. Because we are disabled in varying degrees and in multiple ways, we need support, services and accommodations to successfully navigate a world that is not made for us. Bella needs intense therapy to help her learn basic life skills. She needs her chewy tube to help her sit and regulate her inability to stay still. She requires a service dog to support her physical and emotional well-being. Societal norms are foreign to us. The Capes for Kids campaign is an amazing vehicle to both fundraise and bring awareness to families like ours. We need to and want to belong.
How can our readers help?
Learn more about the campaign at CapesForKids.ca – you can fundraise or donate. Also, take the time to listen to others like us. Bella’s augmentative communication device is her voice. You can say more than a simple ‘hello’. She is more than a cute little girl who has a big smile. She has favourite toys, activities and preferences. If she wants to protest or be heard, she knows the power of her ‘finished’ button. If you are unsure of how to interact with her, just ask. Many conversations about the issues that affect Bella’s life take place without her and our family being present. Listening starts by recognizing that these children have a family who have a valid, legitimate and important things to say. Take the time to include us in conversations with and about our child. With your support, you can directly impact our daily lives and our future outlook.
Do you have any events coming up?
Capes for Kids and Holland Bloorview will have an installation set up at the CF Toronto Eaton Centre on Saturday, February 29 and Sunday, March 1, near the GAP store.
Where can we follow you?
Readers can visit CapesForKids.ca or follow Holland Bloorview on Facebook, Twitter (@HBKidsHospital) and Instagram (@hollandbloorview). You can also follow the conversation through the hashtag #CapesForKids.