The heart behind Handbasket Haven

My grandson carries a genetic variant so rare, it's only been documented in two people worldwide. For us, there was no existing roadmap, no established community, and no doctor who had encountered it before. This stark reality, faced by thousands of families, propelled me into advocacy.

There was a night he looked at me and said Nana I am scared. I do not want to close my eyes because I am afraid I will not wake up.

I knew what that meant. I had worked with people at the end of their lives. I recognized what I was seeing. And I sat beside him and made him a promise — that I would figure it out. That I would not stop. That I would be there when he opened his eyes.

I spent the next 48 hours barely sleeping, one hand on his chest, searching for answers the doctors had already told me did not exist.

That is what this life looks like. Not the advocacy awards. Not the research papers. Not the legislative testimony. The hand on the chest at 3 in the morning. The ambulance calls that other families never have to make. The meals that take an hour to coax down because his body cannot absorb what it needs. The moment he forgets a face he has known his whole life and you watch him work to find it again. The daily recalibration of what today's version of okay looks like.

Every family reading this knows a version of this story. The details are different. The diagnosis is different. But the weight of it the sleepless nights, the system that does not see you, the love that keeps you standing when nothing else does that part is the same.

This section of Handbasket Haven exists for you. For the caregiver at the beginning who does not yet know how to carry this. For the family who has been carrying it so long they forgot what it felt like to have someone in their corner. For the person who just needs to know that someone else has been exactly where they are standing right now.

We have. And we built this for you.