New Athymia Family,

If you’re reading this, there’s a good chance your world has just changed. You may have heard the words congenital athymia for the very first time only days ago. Since then, your mind has probably been racing. You’ve been trying to learn a language you never wanted to speak while carrying a fear you never imagined you’d have to hold.

I know what that feels like. Once upon a time, I was exactly where you are too. I know what it feels like to leave an appointment with more questions than answers. To search the internet late into the night. To wonder what tomorrow will look like. To feel your heart sink every time the phone rings. To celebrate tiny victories while quietly grieving the life you thought your child would have.

I know the fear. I know the uncertainty. And I know how incredibly lonely this diagnosis can feel. The truth is, this journey won’t always be easy. There will be days that ask more of you than you think you have to give. There will be appointments, waiting, setbacks, decisions, and moments when the mountain in front of you feels impossibly steep. I wish we could promise you an easy road. I can’t, but I can promise you this: You will not climb this mountain alone.

At the Luca Rising Foundation, we believe no family facing congenital athymia should have to navigate this mountain without someone climbing beside them. Our Athymia Parent Council, the Mountain Guides, have all stood where you’re standing. We have felt the weight you’re carrying. And now, because others helped us find our footing, it’s our privilege to help you find yours.

Sometimes that means answering questions at midnight because your mind won’t stop racing. Sometimes it means helping you understand medical terms that suddenly seem overwhelming. Sometimes it means connecting you with another family who simply gets it. Sometimes it means reminding you to breathe when everything feels impossibly heavy. However you need us, we are here.

Our hope is that one day, when you’ve climbed farther up this mountain than you ever thought possible, you’ll look back and realize just how much strength you found along the way. Until then, we’ll keep walking beside you—one step, one milestone, one victory at a time.

Inside the welcome kit, you’ll find resources designed to make these first steps a little less overwhelming, including educational information about congenital athymia, guidance for caring for your child at home, tools to help explain the diagnosis to family and friends, practical resources, emergency information, community connections, and ways to reach us whenever you need support.

Most importantly, you’ll find something that can’t fit inside a folder, hope. There is an entire community standing behind you. Families who understand. Parents who have cried the same tears. Children whose stories remind us that miracles and resilience often grow together.

Welcome to the Luca Rising Foundation family. We’re so sorry you have a reason to be here, but we’re so grateful we have the opportunity to walk beside you.

With love, understanding, and hope,

Jessica Discepoli

Founder & President

Luca Rising Foundation

“From ashes to advocacy, together we rise.”