It took me a moment to come down from the momentum, adrenaline, shock, relief, celebration and joy that came from the last month of 2025. The hopes/wishes I expressed in my last post turned into a reality. On Tuesday, December 16, 2025, Secretary Robert F. Kennedy Jr. added both MLD (Metachromatic Leukodystrophy) and DMD (Duchenne Muscular Dystrophy) to the RUSP (Recommended Uniform Screening Panel) – AKA the foot prick blood test that every baby gets after they’re born.

And it happened much sooner than I expected.

Following our most recent visit to D.C. in the beginning of December (where Keira and I had a meeting at the White House and spoke on a panel at a Congressional Briefing), just a few days later we were invited back for an intimate meeting with Secretary Kennedy. Little did we know, this meeting ended up being a ceremony that was live-streamed and one hour before it started I was told that they would like me to say a few words.

As we walked into the “meeting” room in the Hubert H. Humphrey Building on Independence Avenue, we were surprised to see a U-shaped seating panel in front of many flags with two TV screens on either side. A giant camera was in the middle to live-stream the occurrence and behind it were rows of seats. We assumed these rows were for us, the MLD families in attendance. A few seats had names on them but none for us. As we settled in, Dave turned to me and said “I think your seat is actually up there…” pointing to the U-shaped panel. Shockingly, he was right, it was Secretary Kennedy seated next to his Chief of Staff Dr. Stephanie Haridopolos and to her left was myself, followed by two other parents. To the Secretary’s right were a number of Governors who had supported the reason we were all there that day: to add these two rare diseases who have known curative treatments to nationwide newborn screening.

I didn’t know until that morning what exactly was going to happen at this meeting. And I was in tears when we found out. It was hard not to tear up again as it came time for me to speak, but thankfully I held it together and kept my remarks short and sweet. As I mentioned in my remarks, it was an extremely bittersweet moment with Dave, myself, Eva and Keira in attendance while Livvy was at home with her Grandma, unable to walk, talk or benefit from the treatment her sister received 5 years ago.

But thanks to Secretary Kennedy, his team at HHS, the Governor’s in attendance, as well as those who helped support these efforts along the way – including AZ Congressman David Schweikert and Representative Greg Stanton – soon, no other family will have to live through what we have: losing one child in order to save another.

It truly is a miracle that just over 5 years had gone by since the girls were diagnosed, and in that time the treatment Keira received became FDA approved and now it’s been added to recommended newborn screening panels for the United States. The many families before us have truly paved the way, and worked for decades to get to this point. I sincerely hope the speed with which the treatment became FDA approved and the time until screening is recommended continues to lessen. For MLD alone, one baby is born with it each week. So the longer we wait to implement newborn screening, the more babies will face the same fate as our daughter Livvy (an average lifespan of 6 years old).

And while this addition is a monumental step forward for families like ours, our work isn’t done. Now, the 15 states that are RUSP-aligned (AZ among them), have to actually set up their labs to include the test for MLD. Which can take up for 18-24 months.

Since we returned from D.C. on December 17th, I’ve already emailed both Congressman Schweikert and Representative Stanton’s office, sharing Secretary Kennedy’s actions to include MLD and DMD, along with why it’s so important to implement testing sooner rather than later. I hope that the state of Arizona and its newborn screening department realize the gravity of this situation and how many lives they will save by acting swiftly.

See the full live stream of the ceremony here:

See below for a post from HHS from this meeting, that includes a group photo along with a shot of Secretary Kennedy giving Keira one of his challenge coins.

And below is an article from our local newspaper, the Ahwatukee Foothills News, recapping our family’s journey to this point.