Caring for a child diagnosed with a rare chronic condition is no small feat for anyone, but this Mom, Rebecca Martin, is definitely rising to the challenge.
In her blog, The Waiting Room Life, Rebecca explains her goal to become a role model for all parents after her darling son Max was diagnosed with GLUT1 deficiency syndrome (GLUT1 DS). This disease affects the nervous system, and is associated with numerous neurological signs and symptoms.
About 90 percent of people diagnosed with GLUT1 DS experience seizures during the first few months of life.
Families, particularly parents, often times feel helpless, frustrated, guilty, and angry when their child is struck with a mysterious disease; they don’t know where to turn. They crave information and shared experiences from other parents as they brave life caring for the special needs of their children, who are chronically ill. Each and every day, parents and caregivers of children with GLUT1 DS face a multitude of challenges—sometimes even the smallest decisions can make the biggest impact on the health of these children.
In her blog, Rebecca shares her worries and fears, but also her uplifting and sometimes humorous experiences caring for Max, who she loves dearly. Unconditionally.
Because Max has to follow a special high fat diet, commonly known as the Ketogenic diet and Modified Atkins diet to help control his seizures, Rebecca always brings along high-fat foods whenever they leave the house.
One day, to the delight of the “fashion police,” Rebecca ditched Max’s Spiderman backpack, for a chic looking makeup bag to carry his many different foods. Who knew that carrying around a stick of butter—yes—a stick of butter could look so “red carpet”—and boost her morale at the same time?
It’s this kind of spirit and creative savvy that we should all learn a few lessons from. But most importantly, she’s out there because she wants to offer hope and inspiration as well as some helpful tips, to brighten all of our days.
Kudos to you, Rebecca! Rock on! Take a look at her blog for her stick of butter story and much more!
Help Rebecca share her story with millions of other parents caring for a child living with a rare disease by choosing a social network below.
