“Unfortunately, the technology we have right now is not good enough for what we really want. People will talk about what we are doing, ‘Is it 100%?’ No, it’s NOT. It’s about 5% of what we want. But if we do nothing, nothing is worse than what we're trying to do here.” Terry Pirovolakis, Rare Dad.
Sanath and Ramya have gained great strength from the community of Rare parents. On this episode, we talk to Terry Pirovolakis, another father who is looking for a cure and treatment for his son Michael’s condition. They have found ways to work with each other and with other families. They are growing a community from scratch.
We talk about the benefits that such a grass-roots community provides. They are able to raise questions and get advice in a comfortable and safe space. They have learned how to set expectations for each other to keep the community strong. Terry talks about the brave parents who have gone before them and those who will inevitably follow.
Technologies will come and go, families will join and stay as long as they need to, and this community continues to exist for them. The stories of all these families create a rich history that inspires, educates, and strengthens parents who are on the quest for help for their kids.
You can donate to Terry's fight for Michael at https://cureSPG50.org
This is part 1 of 2. Next time, we will talk to Terry about his Fundraising efforts and progress.
Sound Design and Music: Jacob Tompkins
Graphics: Ramya Ramaswamy