After we left Utah for the first part of spring break, we headed to Iowa for some pretty incredible BBS vision restoration research, and to spend time with some of our favorite people in the world.
Our friends the Barneys are mission presidents there and they are some of Lucy’s heroes. But Iowa is also a hub for state-of-the-art vision research, and those doctors are heroes too. Let’s talk about the BBS part first.
A BBS Vision Restoration Research Study
As part of the vision restoration research happening in Iowa, Lucy was invited to be part of a study for kids with her same syndrome. Not just BBS (Bardet-Biedl) in general, but her specific gene sequence: BBS 10. We are all about gathering any pieces of information possible to help cure vision loss. How we would love to stop Lucy’s retinal degeneration, and better yet, restore her lost vision. Even if it’s too late for her, how we want to help others who are suffering.
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 have, the better they can search for a cure.
There is something pretty incredible about doctors who can make Lucy go from the picture on the left to the picture on the right below:
The pictures can’t tell the whole story, but believe me, that transformation was nothing short of a miracle. We love Dr. Drack.
A Pre-Appointment Dinner with Dr. Sheffield
We did have an appointment before the appointment at the University of Iowa: a dinner with one of the leading researchers of BBS, Dr. Val Sheffield. There was something going on in Iowa that weekend and the only flight we could get was at 5:30am on a Saturday. So we took it for Lucy’s Monday appointments, even though our friends were away at interviews and a stake conference three hours away and didn’t get back until Sunday afternoon.
A Little Divine Orchestration
I think that earlier flight was a little divine orchestration at work. Because we had that extra evening, we were able to go to dinner at the Sheffields’ house. Dr. Sheffield has written over 300 research papers 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. He and his family happened to be in the same ward with our friends who served a mission in Iowa City, and we had run into him last time we were there. He had invited us to his lab but we were leaving town and hoped to return someday.
Coming back to see Dr. Drack for the clinical study Lucy was invited to help with, we had time to have dinner and a deeply 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 in 2014):
A Long Day of Appointments at the University of Iowa
On Monday we reported to the hospital at 8am and didn’t finish until 6:00pm. It was a lot: test after test after test.
Lucy started off really rough. Once Lucy starts going down a path there is sometimes no turning back. But gradually the day turned around. Dr. Drack is quite incredible. She got Lucy smiling (see the photo at the top of this post), built her up, and explained so much to us.
She is doing some quite incredible things with her research and there really does seem to be valid hope on the horizon for BBS vision. We’ve had hopes dashed over and over again through the years, and sometimes hope is scary. But we still cling to it.
Visiting the Research Labs
Both Dr. Sheffield and Dr. Drack invited us to visit their labs. We learned so much and felt so cradled in goodness with those two kind doctors.
Our Other Iowa Heroes: The Barneys
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 so many years with these guys.
I love that we’ve had a few chances to make new memories in that spot in Iowa, and it looked like we’d get one more when we returned for Lucy’s follow-up appointment. We did go back, and you can read about that second Iowa visit here.
We met up with the Barneys for dinner when they got back from their travels on Sunday afternoon. Our friends from here in the desert are serving as missionaries in their mission and made us the best dinner. We finished off with games, and you can tell how Lucy feels about that:
Pretty happy about it. 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.
Three years is such a long time, but I love that we can always pick up right where we left off with 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.
A Mission-Wide Devotional
Our friends asked Dave and me 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 with all the missionaries in their mission:
Dave told the story of Lucy and her basketball team experience with her permission. Then it was off to the Mormon handcart trail, brunch, and the airport.
Goodbye Iowa until next time! We had to go back in 6-12 months for the second part of the clinical study. This was the little nugget of knowledge that made Lucy start to unravel at the beginning of Monday. But by the time we were headed to the airport she was pretty much looking forward to that next trip. That’s how great these people are.
More from Lucy’s Vision Journey
If you want to follow along, here are more posts about Lucy’s journey with BBS vision loss:
Oh, good doctors are a real blessing. Is Lucy interested in serving a mission? Does she have plans for the time after High School?
She doesn’t know about a mission yet. She’s sure working on her college plans. We’ll see on that!
xoxo
Loved seeing this so much! What an incredible bunch of doctors are working on this very complicated BBS dilemma! What a remarkable Mom and Dad! You go Lucy! Love you so much!
We are so grateful for these bright, incredible doctors!
xoxo