vision Restoration research and friends in Iowa

After we left Utah for the first part of spring break, we headed to Iowa. Because there is some pretty incredible vision restoration research going on there. Along with some old and new friends.

As you might remember, our friends are mission presidents there. They are some of Lucy’s heroes (I’ll get to that).

But ALSO, Iowa is a hub for some state-of-the-art vision research. And they are sure heroes too! Let’s talk about the BBS part first.

A BBS Research study

As part of that vision restoration research Lucy was invited to be part of a study for kids with her same syndrome. Not only BBS (Bardet-Biedl) in general, but her specific gene sequence of BBS: She is BBS 10. We are, of course, all about gathering any pieces of information possible to help to cure vision loss. Oh how we’d love to stop Lucy’s retinal degeneration, and better yet, restore her lost vision. But even if it’s too late, how we want to help others who are suffering from vision loss!

Because of this, Lucy was willing to undergo a series of tests to give researchers in Iowa a window into what happens in BBS eyes as they degenerate. The more information they know, the better they can address the search for a cure.

And there is something pretty incredible about doctors who can make Lucy go from this picture on the left to the picture on the right below:

Oh, the pictures can’t tell the whole story, but believe me, that transformation was nothing short of a miracle.

We love Dr. Drack!

Our pre-appointment appointment

I know there are a lot of “appointments” up in that title, but we did have an appointment before the appointment at the University of Iowa. It was a dinner appointment with one of the leading researchers of BBS, Dr. Val Sheffield.

There was something crazy going on in Iowa that weekend. We still haven’t figured out what it was, ha! But the very only flight we could get was at 5:30am on a Saturday. So we took it for Lucy’s appointments on Monday even though our friends were gone to interviews and to speak at a stake conference three hours away and didn’t get back until Sunday afternoon.

Divine Orchestration

I think this earlier flight was a little divine orchestration at work.

Because we had that extra evening, we were able to go to dinner at the Sheffield’s house. Dr. Sheffield has written over 300 research papers full of information about BBS and is working with BBS mice to further his research. He happens to be a member of our church and helped us with our BBS family conference in Iowa years ago when I was on the BBS family board to put it on. He and his family happened to be in the same ward with our other friends who served a mission in Iowa City and we ran into him last time we were there. He had invited us to his lab but we were leaving town and hoped to return some day.

You see the divine orchestration at work there?

So there we were coming back to see Dr. Drack (another really awesome researcher who is making some serious strides with BBS retinal gene therapy and is the one doing the clinical study Lucy was invited to help with), and had time to have dinner and such an enlightening conversation with the Sheffields.

We also got to attend church with them the next morning. Here we are in the same spot, pictures taken ten years apart (the first was back when we hosted that BBS conference there back in 2014).

Appointments at the University of Iowa

On Monday we reported to the hospital at 8am and didn’t finish until 6:00pm.

Yikes.

It was a lot. Test after test.

Lucy started off really rough. And once Lucy starts going down a path there is sometimes no turning back.

But gradually the day turned around, these doctors are so good. Dr. Drack is quite incredible. She got Lucy so happy (see the photo at the top) and built her up and explained so much to us.

She is really doing some quite incredible things with her research and there really does seem to be some pretty valid hope on the horizon for BBS vision. Oh we’ve had hopes dashed over and over again through the years, and sometimes hope is scary, but we still cling to it.

Lab Visits

We felt so lucky that both Dr. Sheffield and Dr. Drack invited us to visit their labs. We learned so much and just felt so cradled in goodness with those two kind doctors. Man, we are so lucky.

Other Iowa Heroes

Our other Iowa heroes are our friends the Barneys. They are serving as mission presidents over nearly 200 missionaries and oh! Those lucky missionaries.

We have been through lots of years with these guys!

So grateful all the memories we share through the years.

I love that we’ve had a few chances to make new ones in that spot in Iowa, and it looks like we’ll get one more when we go for Lucy’s follow-up appointment. (They will be there for three years in total.)

We met up with these best of friends for dinner when they got back from their travels on Sunday afternoon. Our other friends from here in the desert are serving as missionaries in their mission and they made us the best dinner.

And we finished off with games. You can tell how Lucy feels about games in this picture:

Yep, pretty happy about it.

And the awesome thing is that Lucy loves these guys as much as we do. They are SO good to her.

She asked if she could get a picture just with them:)

Sweet.

Three years is such a long time, but I love that we can always pick up right where we left with these friends we love.

(That second picture is from right before these guys got their mission call.)

After all our doctor appointments on Monday we met up for dinner…and of course, ice cream.

Mission-Wide Devotional

Our friends asked Dave and I to do the mission-wide devotional on Tuesday morning.

It was so fun to show the missionaries old pictures of Denny and Nichole as we shared some thoughts about faith. Just picture that whole computer screen filled up with all the missionaries in their mission:

It was so fun to see them all.

And see that picture behind us? Dave told that story of Lucy and her basketball team experience (with her permission).

Then off to the Mormon handcart trail, brunch and the airport.

Goodbye Iowa until next time!

We have to go back in 6-12 months for the second part of the clinical study. This little nugget of knowledge is what made Lucy start to unravel at the beginning of Monday. But by the time we were headed to the airport Lucy was pretty much looking forward to that next trip. That’s how great these people are;)