The concept of advocacy might seem overwhelming to some. In reality, as parents of a child with disability you have been advocating from the moment they were born. Remember the time they needed a medical intervention that you had to push for? Remember when your non verbal child was pushed around at the playground by another child and you had to be their voice? Remember the discussions and meetings with their school so they get the support they need? Remember that long phone call with insurance to get them to approve a claim? Every time you have spoken on behalf of your child, argued for their cause, and supported their needs, you were being an advocate, and a pretty good one too!
As parents with children with rare diseases, we are often presented with situations as if we have no control over the present or the future. From the moment of diagnosis we are told “just go home and love your child”. The truth that many hide from us, either purposely or by habit, is the fact that there is so much we can control, so much we can change, so much we can access. We need to feel empowered and we need to continue to speak up. It’s a big responsibility but a choice you can make to not just accept the status quo and to drive towards what you need for yourself, for your children, and for your community. It’ll soon stop being about your child and your family and it will become a driving force for positive change that will reach generations to come. 
I advocate by telling our story. I advocate by making it personal for decision makers. I advocate by being part of the change I want to see. I advocate by believing that communities will do better if given the opportunity. You will be surprised by how far this one phone call will take you, by how impactful others getting to know your child is, by how powerful your efforts can be… Feel empowered, take a step, and watch the magic happen. 

Carole Bakhos is the Executive Director of Jordan's Guardian Angels.



February 16, 2023