Baby Katie Beth

Last week a couple at our church gave birth to a precious little girl. Unbeknownst to them prior to her birth, she has a rare syndrome called Zellweger syndrome (or possibly another similar condition, tests are still being run). In either case, the prognosis is not good and she has been given between 6 months and 2 years to live. We have only spent one evening with this couple, but we have heard many praises sung about their character through mutual friends at church.

The reason I wanted to blog about this is two-fold. One, I’d like to ask all you who follow our blog to please take a minute right now and pray for them and their daughter, Katie Beth. Here is a picture of her (isn’t she so cute!? Look at all that hair!)

Secondly, (though we have yet to become better acquainted), I honestly haven’t been able to stop thinking about this couple since their little girl was born. This is partly because my heart has been aching for them and the pain they are surely enduring, and partly because, as we have been following their updates, God has really been doing a work in my heart through their response to the situation. I have been incredibly inspired by them and personally convicted as a result. Here are a few things they have written that have hit me like a ton of bricks:

-“[6 months to 2 years is] not as much time as we had hoped to have with our daughter, but we’re thankful for the time we have.”
-“On the way home we talked about how happy we were to be doing this together. There isn’t anybody else I’d rather be doing this with…we thought of couples we’ve seen pass through our community that might not be able to handle this type of stress in their life. But we’ve been in training for five years now, and, at least so far, our spirits are strong and we’re as in love as ever. God works in mysterious ways I guess.”
-“Your prayers are working, and we’ve been blessed to see God working such miracles firsthand.”
-“We continue to have hope that, no matter what happens, we can raise her up in the way that is right as an act of worship to God whom we thank for the wonderful opportunity to care for one of his children.”

Do these words convict your heart like they’ve convicted mine? Put in their situation, would you have a similar God-centered and positive outlook? As I read those words and spend time thinking about this family, God continually brings to mind all the absolutely ridiculous and comparably inconsequential things I complain about. Watching this family deal with such a difficult and devastating situation with such love and thankful hearts, has swiftly knocked me upside the head and put things into perspective for me. It reminds me of the verse in 1 Corinthians 1:27b that says: “God chose what is weak in the world to shame the strong.”

Their clarity of mind and big-picture perspective in the face of such unexpected adversity moves me. I only pray that if I ever experience anything like this that I would have a similarly joyous heart. What a wonderful example of a couple who trusts the Lord and His plan so fully, and is truly living out 1 Thessalonians 5:16-18 “be joyous always; pray continually; give thanks in all circumstances, for this is God’s will for you in Christ Jesus.” This is not to say they aren’t grieving and experiencing pain (I’m sure they are), but I believe they are able to remain uplifted because they are grounded in their relationship with Christ and ultimately know their lives rest safely in God’s hands.

I’ll leave you with this prayer that has been on my heart:

Jesus, I pray that you would love on this family right now. I pray for healing and nothing short of a miracle for Katie Beth. Continue to give this family so much peace, hope, and joy. In times of sadness, let them know and experience your intense and passionate Fatherly love. Give them the strength to love little Katie Beth with such fervor. You have paired this couple with this precious little girl for a reason, and I pray that you would continue to use this family to bring glory to Yourself.

Jesus, please give me an ever-increasing heart of gratitude. Help me to maintain an eternal perspective and help me to remember to praise Your name in all circumstances. More than anything, thank you for loving me so much that you would send your son to die on my behalf. I am humbled and in awe of your never-ending and unconditional love.

[An update to this post was published on November 22, 2012. Click here to read it.]

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Melissa Felker

I blog to share my life, entertain, inspire, inform, encourage, challenge (both myself and others), and of course, for personal therapy - haha! I love to write about meaningful experiences and a wide range of topics I find interesting. I particularly enjoy sharing life in a raw and barely censored fashion because I highly value authenticity.

6 thoughts on “Baby Katie Beth”

  1. I am crying right now:-) I am so glad that we have become friends and can’t wait for you to be as blessed by your future relationship with kevin robyn and baby Katie Beth. They are wonderful people and amazing example to us all a true testament to God’s unconditional love and faith.

  2. girl I cry every time i read the posts about her! I don’t know them well either, met them once briefly but wish i could do something to help/bless them! They are so strong and have such a good outlook on things- it’s amazing!

  3. Wow. I know Kevin and Robin from the Young Marrieds group, but we moved to Colorado about 3 years ago so I have been watching this unfold from afar. You totally just summed up every thought I have had since this all happened. Kevin has been so honest and open on his blog and as a result I have been incredibly humbled by the knowledge that I could not do what they are doing, with the Joy that is so apparent. Joy is different from happiness; happiness is circumstantial while Joy is attitude of the heart. Joy is from God, not something we can manufacture or fake. Even from Colorado I can see their Joy and it’s truly awesome. Thank you for writing this.

  4. Hello. My name is Pamela Marshall. I found this blog when searching for information about peroxisomal biogenesis disorder – zellweger spectrum disorder (PBD-ZSD). My son, Ethan, is two years old and was diagnosed with PBD-ZSD when he was just 28 days old. I am the FamilyRegistry and Support Group Coordinator for the Global Foundation for Peroxisomal Disorders (GFPD) — a group that is dedicated to families who have children diagnosed with PBD-ZSD. The GFPD connects over 200 families from more than 20 countries around the world that understand the PBD-ZSD diagnosis and journey all to well. I hope that you will share my information with Katie Beth’s parents. They are not alone! My email is I also have a blog about our PBD-ZSD journey —

    1. Hi Pamela, thank you so much for your thoughtful comment and for reaching out to others in a similar position – that is so neat! The Schlichter family actually found out after I wrote this post that Katie Beth does not have zellweger syndrome…a huge blessing!

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