The Riley's Road to Italy

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The Riley’s Road to Italy

A journey of hope for one family to save the life of their youngest daughter from MLD.

Armer Foundation Gala

In 2020, when we knew we had A LOT of money to fundraise to save Keira’s life, Dave’s Aunt Malinda suggested her friend Jennifer’s non-profit as a supplement to fundraising on GoFundMe. I had never heard of The Armer Foundation for Kids before and was a little skeptical at first but after some research and…

by rileysroad August 8, 2022

Mother’s Day Rings Different After D-Day

It was a few days before Mother’s Day this year that Dave had to remind me that it was coming up the next Sunday. And immediately I got that same feeling of dread and guilt that I felt on my first Mother’s Day after receiving Livvy’s diagnosis (coined D-Day). I was sick to my stomach.…

by rileysroad July 15, 2022July 15, 2022

2022 Cupcake Gala

It’s been so busy this past month that I haven’t had a chance to update the blog regularly but I can’t not mention our trip to Philadelphia, Pennsylvania last month to attend The Calliope Joy Foundation’s annual Cupcake Gala. One of the special guests in attendance? Our very own Keira. The Calliope Joy Foundation was…

by rileysroad June 15, 2022June 15, 2022

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.


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