The Riley’s Road to Italy
A journey of hope for one family to save the life of their youngest daughter from MLD.
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…
CureMLD.com
CureMLD.com’s Founder Maria Kefalas helped the Riley family to learn about the option of gene therapy. Head to their site to read more about this extremely rare disease and resources available for families.
MLD Foundation
The MLD Foundation is the longest running resource for families affected by MLD.
Visit their site to learn about the disease, clinical trials available and meet other MLD families.