Blog-page-1 | South Carolina | Drake Rayden Foundation

Living with NKH

I have so many that ask what living with NKH is like.... It is this... Sunday’s used to be naps and rest... and in some ways it still...

Tarah OSullivan

1 min read

We all just came off our first family vacation to Disney World. The grandparents surprised us with a family trip and it was a wonderful...

Tarah OSullivan

4 min read

Everyone is doing well. Drake has had some highs and lows these past few weeks. The lows are hard, as they remind us just how fragile...

Tarah OSullivan

4 min read

The Drake Rayden Foundation fights for better treatment for NKH through raising funds and encouraging research. We also want to be a...

Tarah OSullivan

2 min read

We wanted to update on Drake’s progress and the foundation’s direction. First, let me say… thank you…..thank you for all your prayers,...

Tarah OSullivan

5 min read

Our kids, and their friends in the neighborhood, have wanted to do something to have their own "fundraiser" for Drake... I came home from...

Tarah OSullivan

1 min read

Eric and I just came home from a cross country drive up to Notre Dame University in Indiana. We spoke with researchers, directors, and...

Tarah OSullivan

5 min read

Drake is doing well. He has calmed down from the seizures we were seeing the week before. His weight has increased, so we are seeing...

Tarah OSullivan

4 min read