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 goal is to provide an opportunity for families to connect at least two or three times a year. We hope you can join us! Check out our “Events and Programs” to stay updated.
If you have any questions or would like to get involved, please email me at shannon@louisianamdc.org.