The Riley’s Road to Italy
A journey of hope for one family to save the life of their youngest daughter from MLD.
Loss of Timeline
When you become a parent it’s almost automatic to write down the dates of your children’s milestones. Rolling, sitting, walking, talking, running, etc. But when they have a terminal illness like MLD, you begin to avoid those dates because it generally means loss of milestones. Looking back at my notes, I did not put a…
A Sigh of Relief
After about 6 weeks from returning from Keira’s check up in Italy, we finally got the results of the very last test we were waiting on – the main test we went there for because it cannot be done in US labs – to see if her body was still creating antibodies to the ARSA…
Advocating for Your Special Needs Child
Rod Paige (the 7th United States Secretary of Education) once said “There is no more powerful advocate than a parent armed with information and options.” Now, as a special needs parent, I fully understand the truth in this quote. Yes, every parent must know that part of their job is advocating for their child. It’s…
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.
