“Awareness” – Lacy
I find myself thinking a lot about awareness. It has been a buzzword in our lives for the past five years since we found out that Jacob has Creatine Transporter Deficiency. It is a diagnosis we never thought we would get mainly because we had never even heard of it. We figured he had an intellectual delay and that would be that. We never dreamed there would be a name for Jacob’s condition and we would find a whole community that shared it too. A diagnosis meant that we could explain what was happening and bring some light to this rare disease.
Awareness comes in so many forms. I have had so many discussions with people as to what CTD means. I have also learned so much from those who have been on the same journey with their children. I recently signed up to be a part of a new research study for parents of CCDS children. The purpose of this study is to bring our issues and challenges to the doctors and researchers that are working for these kids. It is a wonderful way to bring a new perspective to those that are already working on these diseases.
I am very honored that my employer has joined our family in bringing awareness to CCDS. Coastal Carriers Truck Lines has added a new truck to the fleet. This truck has the CCDS ribbon, Jacob’s picture and a QR code that leads to Jacob’s story on the ACD website. We are hoping to bring knowledge when people see this truck rolling across the US. It has only been on the road a few months but the driver has already had several comments and people slowing down or stopping to look. It has even had the opportunity to be featured front and center at a charity event for one of our customers.
It honestly takes a whole community working together to bring awareness to those living with this rare disease. We are very fortunate to be a part of so many great groups of people that care so much. My hope is that from this awareness we will be able to change the future for those living with this disease.