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Thanks for stopping by. Havyn is our tough little cookie. Soon after she was born we started noticing several spots on her skin. Fast forward a bit and we found out that she has a pretty tough genetic disorder called Neurofibromatosis Type 1 (NF-1). This tumor-causing disorder has been hitting her pretty hard. While not cancerous, she has brain tumors and a spinal tumor. She recently finished 18 months of chemo and those little jerks are no longer growing.

Enjoy taking some time getting to know our little nugget. We started this blog as a means to keep our friends and family updated on Havyn’s latest development. Our hope is that her journey will be an inspiration. This life is full of pits and struggles but God seems to always find a way to redeem things and Havyn’s journey has been no exception.

Read below for the most recent posts or visit the full blog for an archive of all posts.

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Bring on the mail!

We have an address for Havyn! ATTN: Havyn YoungShriners Inpatient4400 Clayton AveSt. Louis, MO 63110 If you’d like to send a birthday card or get-well card I know she’d love to get the mail! šŸ™‚ If you’d like to send a gift would you consider waiting until we’re back home? I think we already have …

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First day in St. Louis – and info about Facebook!

First of all… for regular, short updates and photos please join our private Facebook group! (https://www.facebook.com/groups/youngsbythearch) We’ll continue to occasionally post to this blog, specifically with lengthier detailed updates. But for the day-to-day adventures, follow us over there. We’d love to have you follow Havyn and her siblings! A wild adventure awaits! Now to the …

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What’s With Her Name?

When Havyn was born we had the most difficult time choosing a name for her. We had already decided her middle name would be “Joy.” It was our hope and prayer that she would grow into someone who truly embodied joy.Ā Life throws curveballs at all of us — and we have a choice how to respond. It has been, and continues to be our prayer that she would be able to smile through life’s punches, and have faith in the midst of the storms. Joy rises above the trials of the day. Joy reaches past the moment and clings to something bigger. We had no idea how soon that joy would be tested, but she has an opportunity every day to smile. So do you.

We chose her first name (moments before we left the hospital with her) after much debate. We landed on “Havyn” for a few reasons. First, one of our favorite places is Grand Haven, Michigan. I (Steve) spent much of my childhood there and asked Tammy to marry me there. It is a special place for us and want to always have a piece of it with us. But we also like that a haven is a shelter from the waves. It’s a place of rest and refuge. It’s a place to be comforted and calmed. It’s been our desire to see Havyn grow to be one who lives in a haven but also ushers others into that grace.

We changed the spelling from Haven to Havyn because we’re difficult people and apparently we want her to have a complex her whole life. Hopefully she’ll appreciate it someday.

About NF-1

Many have asked us about NF-1 and I’m including a couple resourcesĀ that will beĀ educational and inspirational. You can click the infographic to the right to learn more about NF-1. Then, watch the video below from The Children’s Tumor Foundation (CTF). They are on the forefront of NF research and are an incredible organization. Their mission is:Ā Drive research, expand knowledge, and advance care for the NF community.Ā And I love their vision: End NF. If you’re looking to make some end-of-year donations, consider CTF and help them pursue their vision to eliminate this disease.

This video talks about NF heroes like our Havyn. Some of video may be a bit disturbing.

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