Thank you for checking out our website! I live in Mandeville with my husband and three children. Our middle child has a rare metabolic disorder called Tyrosinemia Type 1. With medication, formula, and a low protein diet she is thriving and is a “typical” kid in almost every way.
I started the LMDC to make sure that every family dealing with a metabolic disorder would feel supported and understood. It’s very scary to receive the diagnosis of a lifelong disorder. It impacts our life on a daily basis. But I’ve learned so much and have received support along the way that I want to make sure families realize that they are not alone.
It is so important to connect with others in our community is for the support. There are not many people that understand the struggles and finding someone who does can be invaluable. Being able to connect with someone either in person or online, makes dealing with a disorder a little bit easier.
And living with or caring for someone with a metabolic disorder can be incredibly stressful. To try to cope with the stress I try to make time for me. Having three kids can be stressful enough but when one has a lifelong disorder that must be managed daily it can take a toll. I find exercising and playing tennis are wonderful stress relievers for me. I feel it’s so important for caregivers to find time for themselves. It can be hard but even a 10-minute walk can really clear your head.
Our Board has many goals for this organization. We recently launched this website to provide information and support to families. In December 2020, we were able to send Holiday Care Packages to 40 families. These care packages included low protein foods, gift cards, and holiday cheer! We will eventually have an in-person family event. We would love to get families together to have a chance to meet and make connections.
I’m excited about the future of our organization and how we can support families in Louisiana. If you would like to become involved, please email me at shannon@louisianamdc.org.