Making a Difference Through Advocacy: My Journey to the Dáil
By Elizabeth McNamee
My name is Elizabeth, and I live in Ireland. As a mom to a child with OCNDS, I’ve learned that sometimes the most powerful way to create change is to raise your voice. Advocacy wasn’t something I ever expected to do, but I knew if I wanted to see real improvements for families like mine, I had to step up.
I began by reaching out to a councillor in my area for advice. I asked how I might get our issue brought into the government building for the upcoming budget. He suggested contacting the five sitting TDs (that’s what our parliamentarians are called here in Ireland) and asking them to raise a “topical issue.”
Out of the five, two agreed to help. I chose to move forward with the one I had seen advocate strongly on previous issues. We spent a couple of days going back and forth on the details, and once he put in the request to bring the issue to the Dáil, it was approved. That same night, he raised OCNDS in the chamber. To my amazement, the Minister agreed that it should be considered in the context of the national budget. It all happened so fast, one minute I was drafting words at home, and the next, the halls of government were echoing with our concerns.
For me, advocacy is about persistence, clarity, and knowing that even one person can move the needle when the cause is urgent and just.
I chose advocacy because while we are also fundraising for the CSNK2A1 Foundation, we need answers now for Leo. Doctors here don’t seem too concerned about looking into his muscle issues because it isn’t a “noted” symptom of OCNDS, but when I speak to other mothers, they’ve seen exactly what I’m seeing in their children. We need to know why his muscles are deteriorating. We need answers for him and for every other child and adult suffering with OCNDS.
Hearing OCNDS mentioned in the Dáil for the first time was incredibly moving. Having it spoken about so publicly is desperately needed for such an unheard-of syndrome. To have Leo’s needs recognized by the people who have the power to help felt like such a positive step in a time of uncertainty and worry.
What surprised me most was how kind and compassionate TD Paul Murphy was when I reached out to him, and how quickly he moved from the first email to having the issue addressed in the Dáil.
My hope is that this vote will mean better access to genetic testing for OCNDS. I hope it brings forward research here in Ireland, so that we can begin to understand what the future looks like. I hope it means doctors will receive training on OCNDS, so that parents are no longer handed an outdated printout or put in the position I was in, where when I asked about life expectancy, the doctor simply googled it in front of me. Parents deserve better than that.
To other parents who want to bring their child’s needs to government: research the process in your country, and go to your representatives knowing exactly what you’re asking for. The clearer and more direct you are, the more likely they are to help.
Now that I’ve taken this first step, I’m waiting to see what the budget decides. Whatever the outcome, I know this is only the beginning. I believe if you make enough noise, eventually you will be heard.