Day 147 - John and Carolyn

Tour of Hope Day #3

Sponsored in part by

Baseball Seams Co.

It is because of Henry (Day #119) that I know the Macan family.

Due to Henry’s rare diagnosis, when he was still quite young, my sister and brother-in-law searched online for support groups and stories of others with similar circumstances.

My sister found the Macan family through such a support system. “They live in Kansas and are Royals fans. Do you know them?”

I interpreted the question as, “Since they are Royals fans, you must know them. Do you?”

Named after Bo Jackson, Bo Macan has a disease so rare doctors are naming it after him. He takes 16 medications to try and ease his suffering. I ended up connecting with Carolyn, Bo’s mom, and wrote a children’s book about Bo with significant help from Wilson at MSU.


I reconnected with the whole family — John, Carolyn, Leksi, Johnny, Brookie, and Bo — while writing their story for America at the Seams as the representative story for the state of Kansas. His sister, Leksi, plays softball and her coach helped organize a home run fundraiser for the family. The whole family is quite athletic and everyone took swings to try and take one yard. I also participated and went 0 for however many swings I took.


Leksi’s team, the KC Fireballs, is in the middle of a massive fast-pitch Memorial Day tournament. They played four games yesterday and two more today as the pool play portion of the tournament, with elimination games starting tomorrow. My family drove across state lines to see the Macans on the way to Omaha.

We hadn’t even pulled out of the driveway when Carolyn texted, “Leksi just hit one out!” She has now hit one more home run than I ever hit.

As soon as we pulled in to the parking lot of the Midwest Sports Productions event, a man called out to me, “I see a SuperBo t-shirt!” The man was John’s dad, Bo’s grandfather. Right next to the man was Bo. I didn’t expect him to recognize me, so I re-introduced myself as the writer of his book. He gave me a smile and a high five. “It’s pretty hot out here today. He really needs some air conditioning.” I understood completely.

Carolyn met us at the gates and walked us back to the team. She had already told them about Catch 365 which had to be a hilarious conversation. Wearing uniforms of solid black, the team had an hour until their sixth game started. They grabbed gloves and I played catch with the whole team, including Sami who tore her meniscus and ACL and has surgery scheduled for Wednesday. Been there, done that. Have the scar and proud of it.

Day 147 - half team

One ball, and four, then five, then six…eight…ten of us playing catch. At the end, John gave Sophie one of Leksi’s gloves and she, too, joined in.

day 147 - Sophie

A couple of the pitchers taught me their grips for change-ups and other pitches. I tried my best to show them the various pitches I’ve been working on. My knuckleball wasn’t too bad today.

We got back in the van and headed north. Kaylea and Sophie turned on The Incredibles in hopes of seeing the sequel soon.

For a few years now, I have followed the Macan’s journey through the highs and lows of surviving life with a loved one who has his own syndrome. They are a family of superheroes in my book.

Day 147

Front row: Tierney, Lily, Arisbei, Kaitlin, Hannah, Lily, Emily, Sophie

Back row: Me, Leksi with the glove hat, Sami

Photo credits to Jamie and Kaylea Bryan.