Thursday, January 24, 2019

Trial And Adventure

When Grace was diagnosed with INAD in November 2014, we were devastated to know there was no cure for her condition, even worse there were no treatment options. We were told to continue with therapy and just give Grace the best life that we could. So, we took that to heart and began the long road down A Grace-Filled Journey.

Last year, we learned that a new potential treatment had been discovered in the drug, RT0001, by a company in California called Retrotope, who was hoping to start a clinical trial in the next year. It’s been a waiting game as sites worked hard to get set up in New Jersey and in California. And although we submitted Grace’s name to the study, ultimately, it was up to the site doctors to select the patients best suited for the study.

Earlier this month, we got a phone call from a hospital in New Jersey that Grace was eligible to participate in the first-ever clinical trial for INAD patients. It was officially started in November, and several families had already been enrolled.

Kyle and I have been talking about the pros and cons of the trial for the past year, and whether or not we would go if Grace had the chance. First off, this drug is not a cure for INAD, not by any means. It’s a drug that could help slow the regression of the disease and possibly help patients gain back some skills lost. Other families who have tried the drug already haven’t noticed life-altering changes, but they have noted more alertness and smiles, among other small changes.

Ultimately, Kyle and I decided that we wanted Grace to participate. There might only be a small chance that it helps her, but we want Grace to have every chance life has to offer. The study could also be impactful for INAD research down the line, and we want to be a part of that too. And since the drug is a fat, it’s unlikely to have unpleasant side effects for Grace as well.

This weekend, Kyle, Grace and I will be driving to New Jersey, where Grace will have three days of baseline testing. We return in mid-February, where she will have a chance to start taking the drug. The study ultimately requires two more check-up visits at six months and one year. We ask that you keep us in your thoughts and prayers in the coming week for safe travel, as well as wisdom in making the best decisions we can for Grace.

We're not sure what adventures await us on our journey, but we feel very blessed to have this chance for Grace, and we're so grateful to everyone who shares in our Grace-Filled Journey.


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