My heart breaks for children who are suffering from a chronic or rare disease such as refractory epilepsy or Glut1 disease.
My heart breaks as well for their parents, siblings, and grandparents who’re emotionally and financially suffering as a result. But what’s so inspiring is when a courageous mother refuses to give up and rallies to become their child’s advocate—and heroically gets a positive outcome for their child!
Here’s one such story that will give you courage…..
There’s a mother who posted about her bright-eyed eight-year-old daughter who she loves with all of her might. Her daughter’s birth was normal and as she grew, she became the center of her family’s attention, quite a character, engaging everyone in hilarity and non-stop giggles.
That was until the mom began to notice that her toddler was occasionally making a funny face that wasn’t so funny.
During the next several weeks, the episodes became more frequent as the smiles turned into perhaps “stares?” Then at the age of 18 months, her daughter was diagnosed with epilepsy.
Good that she got the diagnosis, but bad in that the doctors weren’t able to stabilize the seizures—bad that this little girl not only did not have the seizure-freedom she deserves, this once sweet little darling’s personality changed.
Because of the various drugs and different combinations of medications, and perhaps because of her seizure types and the way they could potentially impact the brain, she became a bit aggressive.
But her mother didn’t give up working with her doctors to try and find a right combination, a treatment plan that would work for her daughter—one that had side effects that her tiny body could handle.
Eventually she heard about the Ketogenic Diet and which helped to control her seizures. (The diet has also been useful in relieving symptoms of Glut1 disease.)
Her doctor also prescribed Keppra, an anti-seizure drug made by UCB which helps to control seizures with milder side effects than most seizure drugs.
I’m not endorsing Keppra; I’m just glad it’s helped this sweet girl—that and the Ketogenic Diet, which has also required tweaks.
