Recap of MLD on the Hill
In May of this year, we had the incredible opportunity to go to Washington D.C. with other MLD families, doctors, scientists and supporters to share our stories, and why Newborn Screening is necessary for MLD. Time got away from me so I’m just now posting about it…one week before we return to D.C. (more on…
MLD Newborn Screening Has Halted…
On May 8-9, 2025, Metachromatic Leukodystrophy (MLD) was to be voted upon as a disease to add to nationwide newborn screening panels (the foot prick every baby gets after birth to ensure they do not have a variety of rare diseases). With this in place, any baby diagnosed with MLD at birth would be able…
Livvy’s 6th Birthday Par-Tay
On May 21st, 2024, we hit a milestone we honestly didn’t expect: Livvy turned 6 years old! With the average lifespan of a child with late infantile MLD being 6 years of age, it’s a number that’s always in the back of your mind as a parent. But every MLD kiddo is different. Some pass…
Moms Making a Difference
Happy Mother’s Day! We couldn’t go throughout the day without sneaking on the blog to celebrate our very own Super Mom, who was just featured in So Scottsdale Magazine’s May 2024 issue that had a special section about “Moms Making a Difference”. See it below or read it online here! Happy Mother’s Day, Mom! We…
Why We Need Newborn Screening for MLD
Now that the U.S. has an FDA approved treatment for Metachromatic Leukodystrophy (MLD), you’d think they would automatically add it to the nationwide Newborn Screening recommendations for all states in order to immediately begin saving lives, right? Wrong. Accomplishing this is also quite the process and one that requires the entire MLD community to share…
FDA Approves Gene Therapy Treatment for MLD
It’s been a while since I’ve posted to the blog, but not for lack of updates…lack of time. While much has happened since my last post in November 2023 (Keira turned 4, I continued advocacy efforts for Right to Try 2.0, which you can read in the Wall Street Journal, USA Today and The Epoch…
Keira’s 3-Year Post Gene Therapy Check Up
I can’t believe it’s been three+ years since Keira received this life-saving treatment. As we do annually, one of us heads back to Italy with her, along with Eva and one of our Moms (while the other stays home with Livvy), for her usual check up. But this is not just your typical pediatrician visit.…
A Sound Bath for Livvy
As Livvy has continued to regress, we have noticed one thing has remained true – her love of music! After getting a facial recently at Nourish Face & Body, the owner Brooke used these chimes during my session that I instantly knew Livvy would love, called Koshi Chimes. We bought a set for her 5th…
5 Years of Livvy
When Livvy was diagnosed with MLD in March of 2020, we were told the average life span is six years old. A year later, another little girl in Arizona who was diagnosed around the same time as Livvy passed away. We knew our moments were fleeting, time was precious and to treasure each day as…
What a Miracle Looks Like
I recently took these photos of Keira when she was playing on Livvy’s Make-a-Wish swing set, and I can’t stop thinking about them. I’m sure to a “normal” parent, this would look like everyday life. But to me, seeing Keira’s face in both pictures…it just exudes hope, joy, happiness, and gratefulness. Her standing there, so…
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The Riley's Road to Italy 