-9999
Floor Speech
BREAK IN TRANSCRIPT
Mr. LANKFORD. Mr. President, just like you do, I get a lot of requests in my office. I get about 150,000 emails a year. I don't know how many different requests that I get to come in for personal meetings, both instate and here in Washington, DC, but a few weeks ago I got a video request from a bow-tied 8-year-old asking for a meeting with me--a person I had never met before, but he said he wanted to be able to come in and talk to me about rare childhood diseases. And I have to tell you, you would have to see the video to be able to see the meeting request that I got in from Christian Jaspersen.
He is from Keota, OK, which no one can find here without using Google Maps, I promise you. But he was enthusiastically wanting to be able to share his story about a complex medical history and how things have gone for him. So we said yes.
Christian was born with a very rare medical condition that most of us couldn't pronounce, much less want to be able to live with. He was born with his intestines outside of his abdomen. That impacts about 1,500 babies a year. It is extremely rare.
Patients are born sometimes with their intestines or other organs outside their abdomen. You can imagine the damage that that does, even while they are still in the womb.
Well, he required a ton of surgeries. Several surgeries were required immediately after birth. Several digestive impacts on him will be felt for a lifetime. He spent 5 months in NICU after birth. He lost a significant portion of his intestinal tissue during those different surgeries. It has impacted his nutritional intake and his bowel function, as you can imagine.
There were some clinicians that had recommended to go ahead and remove all of it, and he would spend the rest of his life living on IV nutrition. But he was able to get a second opinion from Boston Children's Hospital. They left out from beautiful Oklahoma and headed for Boston for that second opinion.
They provided some alternative care for him, and he is growing and doing well at now 8\1/2\. He is not just 8; he is 8\1/2\. He credits his doctors for saving his life and allowing him to live his best life now. He still has to go back to Boston often, and there are unique challenges that he faces with insurance and with all the challenges of travel and, quite frankly, the finances that go along with that, but he is a very spunky young man with an extremely large personality.
He played the role of Christopher Robin in a youth production of ``Winnie the Pooh'' recently, and I bet people would pay to see that twice. He also has political aspirations. When I had the opportunity to be able to meet him and his brothers, Noah and Lane, and his mom Rachel yesterday, we had that opportunity to be able to sit down and talk. Christian told me all about the disease that he has struggled with, the treatments that he has had, the heroes at Boston Children's who have worked alongside of him, but he also informed me to be prepared to see him again because he will be a Supreme Court Justice in the days ahead. And he just might be.
So for Christian and for his wonderful family and for all that has happened and the heroes at Boston Children's and for the research that they have done, I have to express the gratitude of my State for all of that work because that is a lot of work to invest in that young man. And he is determined not to waste the investment that has been put into him but to live his best life and to be extremely productive in the days ahead.
I am grateful to the Oklahomans that spent so much time with him, working to guard his life in the earliest days, and for the folks at Boston Children's.
I look forward to ``Chief Justice Christian'' in the days ahead and seeing the work that he does and how that pans out for all of us as a country.
BREAK IN TRANSCRIPT
Source