The Riley’s Road to Italy
A journey of hope for one family to save the life of their youngest daughter from MLD.
Traveling with Special Needs
We’ve all heard the stories of parents traveling with children on airplanes and the issues that can arise while doing so. The crying, the yelling, the bathroom breaks, the snacks, the kicking of chairs, you name it. I would take all of that any day over what we have had to deal with when flying…
One Year Ago
Thanks to Facebook, I was reminded that this was a snapshot of our “new normal” as a family of 5 exactly one year ago today. Three healthy girls, one of which may need some PT for walking. And no pandemic. Easy. Then life happened. 1 move to Italy. 5 surgeries. 4 days of chemotherapy. 1…
Worrying & What Ifs
When we left Italy I assumed I would no longer need to worry constantly about Keira because she will (hopefully) be “fixed”; that my focus would shift solely on Livvy and making her as comfortable as possible as this disease continues to take her life. That was wrong. I feel as if I am even…
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.
