The Riley’s Road to Italy
A journey of hope for one family to save the life of their youngest daughter from MLD.
The Interview: School for Livvy
Schooling was not something we considered would be possible for Livvy given all of her limitations. However, our coordinator with the Arizona Early Intervention Program urged us to look into it and apply so that she is in the system whether we decide to move forward or not. I figured how hard could it be…
Books to Read: Harnessing Grief
I have never met author Maria Kefalas in person. Yet she helped to save our daughter Keira’s life. Within 24 hours of receiving Keira’s diagnosis on June 19, 2020, Maria informed us we had a chance to save her life with gene therapy, connected me with the team of doctors in Italy and sent us…
Clinical Trials & Tribulations
On June 5, 2020 Olivia had surgery to implant the intrathecal port that would be used for the weekly infusions in her clinical trial. The trial itself was aimed at stalling the progression of her disease, Metachromatic Leukodystrophy (MLD). It required weekly infusions for 2 years, with an optional 3rd year. We enrolled for a…
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.
