In search of the ‘ultimate gift’
Hudson Nash was born with significant damage to both of his kidneys.
The boy spent two months in the Neonatal Intensive Care Unit after he was born, and ever since he has been on numerous medications, received multiple shots and blood draws and has seen more doctors than his mother can count.
As the Nash family continues to search for a kidney donor, Hudson, who will turn one next month, will go on peritoneal dialysis until he is big enough to receive a kidney transplant, his mother, Jamie, shared Wednesday just minutes before President Donald Trump signed an executive order overhauling the kidney transplant and dialysis market.
Mrs. Nash was joined by her husband, Andrew, who was holding Hudson on stage at the signing held at the Ronald Reagan Building and International Trade Center in the nation’s capital.
The executive order signed by Mr. Trump is aimed at driving innovation around technology for kidney care, which could include wearable, implantable or 3D printed kidneys.
“In the next 10 to 20 years when he needs another transplant, hopefully it will be a game changer in terms of the opportunities that we have,” Mrs. Nash told the News-Press by phone from Washington, D.C.
The order, which Mrs. Nash said is the first real policy change since 1972, will also focus on increasing transportation and supply of organs available for donation. In addition, it will aim to offer more options to patients and better financial coverage for living donors and recipients.
“It’s long overdue, but we’re excited for the future,” Mrs. Nash said.
Mrs. Nash could still recall getting a phone call from Adam Boehler, Human Health and Safety deputy administrator and director of the Centers for Medicare & Medicaid Services’ Center for Medicare and Medicaid Innovation. Mrs. Nash grew up with Mr. Boehler’s wife, Shire Kupperman Boehler, whose parents are local physicians. Mrs. Nash remembers being confused about getting a call from Mr. Boehler, but said when he gave her an hours notice on whether to attend the signing the family did not hesitate.
“We jumped at the chance,” she said.
Mr. Boehler was nominated by Mr. Trump on Wednesday to be Chief Executive Officer of the U.S. International Development Finance Corporation.
Mrs. Nash said she hopes the signing of the order will result in better public outreach, such as notifying people that they can be living donors and adults can donate their kidneys to children like Hudson.
Mrs. Nash, who served as an intern at the White House in college under George W. Bush, worked in the Office of Public Liaison and was familiar with how the signing ceremonies go, but said being on stage as opposed to working in the background was a totally different experience.
Before Mr. Trump signed the order, Mrs. Nash was one of several speakers to share their personal connections to kidney disease.
“Hudson will have to deal with this his entire life – never going more than three months without a blood draw and multiple medicines, twice a day, forever,” she said at the podium. “Mr. President, thank you for the commitment you have made today to improve the lives of everyone affected by kidney disease, including our Hudson.”
Mr. Trump then shook hands with Mr. and Mrs. Nash before planting a kiss on the little boys cheek.
“Thank you, Hudson,” said the president. “Get better soon, Hudson. You’re going to be good. By the time it comes – by the time he’s a little bit older I think you’re going to have a lot of answers that we’re not even thinking about right now. I really believe it.”
After Mr. Trump signed the order, he gave his pen to Hudson. Mrs. Nash said she plans on getting a shadow box and printing out the order and will fill the box with pictures from their day in D.C.
“It’s really like he’s making history,” she said of her son, adding that some of his doctors in Los Angeles were thrilled Hudson could be there for the signing.
“It’s really just the most amazing thing to get his story out there,” she said. “I pray that we find an amazing living donor match. It would be the ultimate gift to give him that kidney.”
The family has set up a Facebook page for Hudson for people to learn more about becoming an organ donor. For more information, visit facebook.com/akidneyforhudson.