Here we sit in Iowa City for our last weekly trip before heading to Italy. We have been coming here each week since the beginning of June as part of a clinical trial for our middle daughter Olivia (Livvy).
It is currently the only treatment option available in the world for symptomatic MLD children and requires weekly injections for two years. While it is not a cure, the weekly infusions offer the chance to stall the disease.
Results generally aren’t expected for 3-4 months (we are in week 9) but other parents enrolled in the study are seeing positive changes in their children, and some aren’t seeing a progression of the disease at all. We are remaining so hopeful.
Unfortunately Livvy has regressed quite quickly since getting sick in January (we didn’t get her diagnosis until the end of March) and we later found out that if MLD children get even a cold it can progress the disease rapidly. Now, as I’m sure you can imagine, living in a world of Coronavirus and having to take her on a plane weekly to get treatment is very much a double-edged sword. But the benefits outweigh the risk and we are extremely careful when we travel with her.
With our move to Italy imminent for Keira’s gene therapy treatment, we also had to think about what that meant for Olivia. Thankfully, the clinical trial has European sites. Unfortunately, there is not one in Italy. But a short plane ride away to Amsterdam is where we will get to take her (after we quarantine for 2 weeks) to ensure she continues receiving this treatment that will hopefully allow us more time to make more precious memories with her.
We are beyond grateful to have my parents coming along with us to Italy so that they can help us get Livvy’s treatments, and take care of our oldest daughter Eva, while Dave and/or I may be in the hospital with Keira for her treatment. It’s a juggling act to say the least.
We never truly knew the meaning of “it takes a village” until we had a child with special needs. From family, friends and our MLD groups to doctors, physical therapists and counselors. We are SO thankful for our village. ❤🙏