Dave, Lu and I left Dave’s family birthday and visitor week to head out for one last visit to Iowa, to see a good doctor conducting a pretty exciting BBS clinical trial for vision research, and to spend time with some of our dearest friends.
The birthday boy himself dropped us off at the airport.
And us three musketeers were off on another adventure. One of the leading doctors in vision research for those affected with Lucy’s syndrome, BBS, happens to practice at the University of Iowa hospital. Which happens to be about twenty minutes from where some of our best friends in the whole wide world are finishing their three years of mission service as Mission Leaders. How lucky is that?
University of Iowa for Lucy’s BBS Clinical Trial for Vision Research
This is the second time we’ve made the visit to University of Iowa Health Services with Dr. Drack. Lucy is part of Dr. Drack’s clinical study for Bardet-Biedl Syndrome vision research, and I was even more grateful for all this incredible doctor is doing to hopefully save and restore vision this time around.
I’ve been thinking so much about vision loss and how debilitating it really is. My heart is breaking for Lucy more and more as she tries to finish her senior year with vision that continues to decline. I see her carrying so much heaviness as she yearns to run and jump and even just see the homework that is so easy for her classmates.
Can We Save Lucy’s Vision?
At this point we are grasping at straws to help Lucy’s vision. This research may not come in time to help her specifically, and we know by this point in the journey that research just takes time. And money. And more time. And more money. There’s so much that goes into it.
But if Lucy’s participation in any type of clinical study can help future BBS kids, even if it can’t help her, we’re all in. You can read more about the full journey of raising Lucy with Bardet-Biedl Syndrome across many years of posts.
Our Appointments
We had appointments starting early morning with Dr. Drack’s team, a follow-up from last year to see how much retinal health Lucy has retained and whether she can maintain enough for possible future therapies. This girl had every test imaginable: eye exams, dilation, an exhausting number of pictures taken of the eyes, electrodes attached to measure electric responses, pressure testing of the eyeballs. You name it, they did it.
Lucy was a champ through most of it. Dave was too.
We are so grateful for Dr. Drack and all she is doing to research BBS. Not only is she conducting incredible work, but she can make my daughter smile like this at the end of a long day of prodding and poking and testing.
Incredible. We love you, Dr. Drack and team. Praying this BBS clinical trial will bring great results someday for those suffering from this syndrome. Dave and I were also grateful for the chance to sit with her at the end and ask all our biggest questions.
Visiting the Barneys
This is the fourth time we’ve been able to visit our friends in the three years they’ve been gone and we feel so lucky about that. They were such a sight for sore eyes to meet up with for dinner after all those appointments.
I’ll let you guess how excited Lucy was about their choice for dessert:
We loved being part of their world that night and the next day. It was General Conference weekend, so the missionaries they lead were busy with their own conference things. We didn’t get to see them, but we did get a lot of good catch-up time with the people we love for the day we were there.
We mixed in some listening to conference that Saturday, and a little side-trip drive to the Amana Colonies:
Can you tell how much Lucy adores these guys? She is picky about who she trusts and lets in, and the Barneys are among the tops. They are so, so good to her.
To add sweetness to Lucy’s happiness, we played some good games the two nights we were there.
We stayed late talking through the world. These guys are among our favorites to do that with.
We love them so much. I wrote all about our history together last time we went to Iowa.
Needless to say, we can hardly wait for their return this summer.
Then we headed home bright and early the next day, bleary-eyed and full of gratitude, en route back for Sunday General Conference at home.
Thank you, Iowa, for all the grand memories.
More from Lucy’s Vision Journey
If you want to follow along with Lucy’s story, here are a few related posts:
so great that you participate in the trial even if the rewards may only be reaped by others. that’s how science moves forward. has BBS research been impacted by the US govt attacks on science?
I’m sorry to hear that her vision is at this stage. It is not fair. Everyone should be able to see with their eyes. Everyone gets something to deal with, this one is particularly hard.
You have thrown time, money and effort toward fixing it.
Thank you Kristine.
xoxo
Reading what you write about Lucy’s decline in vision is giving me so much to think about as my mother is losing her vision to an eye disease. It helps me to be compassionate and understanding. I am glad you are sharing this.