The Riley’s Road to Italy
A journey of hope for one family to save the life of their youngest daughter from MLD.
Home Sweet Home
On Friday, January 8th, we arrived home after 5 months in Italy. While we were essentially quarantining most of that time due to the pandemic in various stages and out of safety for the girls, each day was non-stop and it went by in a blur. As a client and friend of mine, Chris Rose,…
One Last Hospital Stay for 2020
Just so we could really round out 2020, Olivia and I are currently going on our 2nd night in the hospital at San Raffaele. The other day around 2am she started to get a fever and it kept coming back. The following morning (yesterday, the 29th) it was accompanied by some strange eye movements. So…
3 Months Post Gene Therapy
Today Keira began her 3-day 3-month post gene therapy check up. She had an EEG, bloodwork and saw the orthopedic surgeon. Tomorrow, December 29th, she gets an MRI, lumbar puncture and bone marrow aspirate. Then on December 31st, she has a neurological evaluation and physiotherapy evaluation. We get some results as they arrive this week…
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.
