Hope is a tricky thing in the everyday living of life. Hope is present in the everyday moments; each day that is a good day, gives hope for another good day. A good day is when there is more laughter than tears, when joy spills out in giggles and feet that bounce up and down off the ground in uncontainable excitement. The memory of these days helps and gives you hope on the days when tears, frustration, and struggle reign for most of the day. Most days are a mix of joy, laughter, snuggles, frustration, whining, and struggle, which is probably true for most people. Right now, Peter is doing well, the disease does not seem to be progressing much and for that we are thankful. We hope this continues to be true for a long time, but we also know that disease progression is always on the horizon.
Hope is also a tricky thing when it comes to scientific breakthroughs and clinical trials. On
Wednesday 11/15 we have a Zoom call that will give us more information about a clinical trial for Battens CLN3. We will learn where the sites will be and how far we will need to travel every 6 months. We will learn more details about how to enroll, when it will start and other important details. We will also learn more information about if efforts to convince the FDA that a placebo arm for this trail is not needed were successful.
The week before our call CLN2 Batten’s parents were dealt a devasting blow that the pharmaceutical company that was working on a promising drug for CLN2 has pulled funding from that project. So, while we are hopeful of things on the horizon, other parents are grappling with hopelessness of another closed door. For us even if Peter is a part of the half of the study that receive the placebo, the treatment is still (hopefully) close to being an approved treatment. Being an approved treatment means that it is accessible to CLN3 families as an approved treatment and should be covered by insurance and not an out-of-pocket expense.
Hope is a tricky thing, but when our hope is in Christ we can be assured not of easy answers or cure, we can be assured of His presence with us and His peace that passes all understanding and His grace and mercy which are new every morning. It is our desire that we can continue to find light, joy, and hope in each day no matter what the circumstances. This is only possible because of our faith in Jesus Christ, and the reality that our hope is found in Him. Scientific breakthroughs may or may not happen, clinical trials get canceled, test results show disease progression, death and the journey towards it is a natural part of life, if we place our only hope in those things, we will be disappointed. But the day to day living out of our faith finds us placing our hope first in Christ as well as placing hope in these human things for a chance at more days to choose joy with our Batten’s warrior.
A side note: Joe and I are doing fine. Most times we are able to focus on the present and make the most of the moment in front of us. This blog just is a snapshot of some of the things bouncing around in our head.
