Hyper-IgM Syndrome: Charlie Osborn's Story of Hope

It is an honor to introduce you all to some new heroes of ours, the Osborn family. My brother-in-law actually introduced us to them, and after reading their blog, I am so humbled and filled with admiration for this family. Ashlee and Kenny are walking their son, Charlie, through Hyper-IgM Syndrome, an extremely rare immunodeficiency disorder that makes it difficult for his body to fight off certain types of infections and viruses. Like all families going through medical adversity, this was not part of their plan for their family, but they are stepping through this journey looking to God, loving each other, and caring for their family in a beautiful way. We have tremendous respect for them. 

Currently, Charlie is at Cincinnati Children’s Hospital, where he has been since mid-summer. He just received his second bone marrow transplant last week and has shown incredible bravery and resilience not only during this hospital stay, but in his 2 ½ years, as well!

At only 7 weeks old, Charlie caught a nasty cold virus that brought him to the ER where he went into respiratory arrest. He was saved by the fast-acting nurse staff and has continued to show that he is a courageous little guy who is already exhibiting strong character qualities that many adults aspire to develop.

I love what Kenny wrote recently about Charlie’s ability to find joy and happiness in each day, even in situations most grown-ups would have a hard time rising above:

“What I love about Charlie — and this is a growth area for me — is that he's not phased by any of this.  He's still fully engaged in life.  He's banging around and climbing all over his [hospital] crib.  He still laughs and plays and has a great time.  I know in my own life things [and] conditions have to be perfect for me to be happy.  Not for Charlie.  He's able to find joy even when things are hard [...] he's having fun and just enjoying life — trapped in a 200 sq. ft. room.”

Charlie does have incredible parents to model for him what it looks like to find Jesus in each moment of their day. Whether it's asking God honest questions like, “Where is Your goodness in this physical and emotional pain we are experiencing?” or having open hearts and eyes to see God’s hand in even the smallest details of their check-in at the hospital, Ashlee and Kenny are actively walking out their faith and trust in God as their perfect Father.

So what does hope look like for them? Ashlee put it beautifully in a recent post:

“We actually decided on the front end of all this that we won't play the ‘what if we would have’ game. The truth is, while this was a surprise and disappointment to us, God isn't surprised at all. He knew Charlie long before we did. He knew about all this and He loves my son more than I ever could. (Which is hard to imagine, but true.) He's not surprised and He's not scared. He is Alpha and Omega. He knows how this will end. My hope is that it ends with the complete healing of Charlie's body.

But you know what? I've been thinking a lot about what it looks like for my son's life to be saved. And at the end of the day, we are only saving his earthly body[...]You see, I can't save Charlie from his sin. I can't sign a consent form or give him a ‘Jesus transplant.’ That is all up to Charlie himself, and it will be my prayer for him everyday that he chooses salvation in Jesus.”

Kenny added later:

“I was thinking through hope this morning.  Hope can be a difficult concept.  I actively hope that Charlie gets better, but I imagine that there is a much deeper meaning behind hope.  It's really about where we place our hope.  In what do we hope?  Is it medicine or our ability to care for Charlie or to make good decisions on his behalf?  My hope is that God has a purpose for Charlie whether it's an outcome that I'm happy with or not.  All along we've wanted Charlie's journey to be a showcase for God's character.”

Ashlee and Kenny are seeking God’s presence and comfort in the journey. They are asking God for healing, and they are responsibly choosing the best path of treatment for their son. They are taking moments for each other. They are surrounded by a community of support that is rallying around them. And they are walking their children through what it looks like to turn to Jesus during these days — through honest conversations with their elementary-aged daughter and giving Charlie simple tunes to hide in his heart.

The Osborn’s daughter, Lucy, has been a big part of Charlie’s story as well. For every moment that Charlie has shown bravery, Lucy has, too. She is the picture of sacrificial love in ways that only a sibling of a chronically ill child can understand. And from the pictures alone, I can tell that she is the best big sister for Charlie. Her smile conveys her contagious joy and love, and when she is visiting the hospital? Charlie’s smiles are just a little bit bigger. :)

We are so incredibly humbled by the Osborn family’s faith, love and transparency — not only for each other, but also for the people they have interacted with along the way. We are joining with them in prayer for hope and healing for their family!

Charlie Osborne - Hyper-IgM Syndrome - Family Pic

Charlie Osborne - Hyper-IgM Syndrome - Family Pic

If you are interested in reading more of Charlie’s story, you can find his 1 in a Million blog at http://www.charlieosborn.org.