Hello, my name is Christine Parr Vitter. I live in Terrebonne Parish where I am a public school teacher. Our family is connected to the metabolic disorder community through our youngest daughter. She was diagnosed with VLCAD. Very-long-chain acyl-CoA dehydrogenase deficiency (VLCAD) is a condition in which the body is unable to break down certain fats. It is considered a fatty acid oxidation condition because people affected by VLCAD are unable to convert some of the fats they eat into energy the body needs to function.
I became involved with the Louisiana Metabolic Disorders Coalition because my hopes are to educate others about my daughter’s rare invisible disorder, VLCAD. Also, so that when other families go through the process of being diagnosed they have a place to find support and answers. The time between being told that your child possibly tested positive for something through the newborn screening until the time you are able to make an appointment with a specialist can seem very long. This gives these families a place to get information from individuals who have experiences, knowledge and support that they can give.
I think it is important families that get diagnosed with this and other rare metabolic disorders to be in contact with other families that are going through the same type of experiences for support. Through talking to other families and patients with this disorder, my daughter and I, have made new friends, chatted about issues that we have gone through and brainstormed solutions to ongoing problems. These are unique friendships that can be irreplaceable.
Since joining this organization, my daughter has met and chatted with a girl close to her age with VLCAD. We have a connection of someone who can offer hands-on experience and a lifelong connection. My goal is to make more connections, spread knowledge about rare diseases and to keep advocating for these disorders.
When my daughter was first diagnosed, it was very stressful. I took a medical leave from work as she required care around the clock. At some point, I had to go to the doctor myself and was diagnosed with complications due to exhaustion. I was able to rely on our extended family and close friends to help out when they could. The grandparents took an active role by taking turns watching her so I could sleep/shower/rest; bring over-cooked meals, watching her older sister, helping with household chores, etc. I had to make myself go out and do things once I felt comfortable leaving her for period of time. For a very short time I found that scrapbooking helped to relax me and gave me something to do.
I would love for others to take this disorder seriously. So many people tell me that she looks “normal” and that there does not seem to be anything wrong with her. Most of the time she acts/looks like a “normal” little girl but her body works differently that most others. When she is ill or not eating correctly her health can decline extremely quickly. We carry an ER letter of protocol with us in case of emergencies but even with the letter we have had issues with hospitals not wanting to admit us. We have been sent to a New Orleans hospital by ambulance when she was young because of doctors in Terrebonne Parish not wanting to admit her to their hospital as so much is unknown about her disorder.