Hearing the word phocomelia for the first time was overwhelming and confusing. I had never heard it before, let alone imagined it would be part of our story.

Phocomelia, affecting all four extremities, is incredibly rare.

• 55% of cases - it affects one limb
• 45% of cases - it affects two limbs
• And in 4 out of 141 cases of phocomelia - all four limbs are affected

What a miracle these perfect babies are.

When we began researching, desperately trying to find another child like our boy, it felt almost impossible. No matter how much we searched, we came up empty. And in that emptiness, the loneliness set in.

So many nights were spent crying. Wondering why. Wondering if this was real. Wondering if we would wake up from what felt like a dream we never asked to have.

At first, I was angry with God. How could He let this happen to our baby? How could this be part of His plan?

But —through tears, prayers, and hard conversations—our hearts shifted. The question changed from Why us? to Why not us? We were made for this. Rylen was given to us for a reason.

A couple of Sundays after finding out about Rylen’s diagnosis, we went to church. Only a few close friends and family members knew at that point. One of my husband’s former employers attends that church, and we’ve grown close with them over the years. She came up to us that day and said something I will never forget:

“I believe everything happens for a reason. People come into our lives for a reason. I need to tell you about Nick Vujicic. He reminds me so much of the little boy you are about to bring into this world. I just bought his books and I’m going to read them. Please don’t lose hope. And don’t give up on your faith.”

Those words changed everything.

Because of that moment, we learned about Nick. We eventually got to meet him through a meet-and-greet that was arranged for us. We began sharing his story with others. And little by little, that crushing feeling of being alone started to lift.

To this day, I’m reminded that miracles come in many forms—sometimes as people, sometimes as words spoken at exactly the right moment. If she hadn’t come up to us that day, we may have never found Nick. We may have never found hope the way we did. And we may still feel as alone as we once did.

That’s why we created Rylen’s Reach.

So no one ever has to feel alone in the disabled child world.
So no family feels unseen or unheard.
So no parent feels like they’re standing by themselves in the dark.

We will always be here.

We will always advocate.

And we will always reach for the stars.