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Raising Rare - Raising Rare EPISODE 15, 29th August 2020
When Unrelenting Stress Meets The Relentless Parent (Part 3)

When Unrelenting Stress Meets The Relentless Parent (Part 3)

“The stress comes from all directions. There is emotional stress. The stress that comes from other people we work with that don’t get things done. And then there is the self-inflicted stress of OMG, I need to do this.  And if I don’t…”  Sanath Ramesh

We continue our discussion with guest Amber Freed, Maxwell’s Mom and CEO of SLC6A1 Connect.  In Part 3 we begin talking about the research strategies they are employing. But our conversation takes an unexpected turn. 

Sanath and Amber discuss the struggles of balancing the demands of finding treatments for their sons with the desire to spend as much time as possible enjoying their boys. The lives they are living are extremely stressful and there does not appear to be a way out of this. They each take their own approaches to this impossible choice. 

Donations can be made for SLC6A1 research at MilestonesforMaxwell.org 

Donations for GPX4 research can be made at cureGPX4.org