Photo by Ashley Billings Photography
"Time is free, but it's priceless. You can't own it, but you can use it. You can't keep it, but you can spend it. Once you've lost it, you can never get it back."
- Harvey Mackay
What is Minutes Matter?
We are a non-profit organization dedicated to saving the lives of newborns by advocating to prevent delays in the detection of MCADD through timely Newborn Screening, by raising awareness of the disorder through education, and to offering a community of support for those diagnosed with and affected by MCADD.
WHY Minutes Matter
Time is precious, to us all. But time has special significance to those living with MCADD. From the time of birth throughout life, Minutes Matter.
A person with MCADD is unable to use fat for energy because their body lacks the enzyme necessary to break down medium chain fatty acids. This inability to use fat for energy could lead to a metabolic crisis. If not immediately treated, a metabolic crisis could lead to damage to the newborn's organs thus resulting in developmental delays, or even worse, lead to sudden death. Therefore, immediate knowledge of the disorder is essential because it enables awareness which allows a newborn’s parents’ to provide extra care and attention for the child.
Today, there is no national mandatory standard for states in terms of the time it takes to collect, analyze and return newborn screening results to parents. The minutes, hours, days and sometimes weeks, depending on the state in which the baby is born, that it takes a family to receive their child's Newborn Screening Results leaves the child vulnerable to a metabolic crisis because the disorder is unknown to the parents. As such, the parents are unable to implement the treatment for a newborn with MCADD, which is to ensure that the newborn does not fast for more than three hours, and has an adequate amount of milk to keep the child’s glucose at an acceptable level.
During the first year of life, while the child is most fragile, Minutes Matter. A feeding schedule is a necessity. Watching the clock, setting alarms, and making sure not to miss a feeding. That's what keeps your child alive.
Although many would agree that care gets easier as a child gets older, Minutes will always Matter to an individual diagnosed with MCADD. Periods of fasting must always be monitored, particularly in times of sickness. From the common cold to something more serious like strep throat or the flu, from birth through adulthood, time is always a concern. For example, it is recommended that an individual with MCADD never fast for more than six hours while sick.
Management of MCADD is dependent upon nutrition and time. Minutes Matter. Minutes = Life.