The story of Lorie
Hi,
I’m 28 years old and have been battling mitochondrial disease for at least the past 10 years.I’ve had a stroke at 25,epilepsy diagnosed at 25 but suffered with partial seizures for all of my life–most of the muscles in my body have become infiltrated with a fatty material that caused them to atrophy and basically forces me to use wheelhairs,walkers,and scooters to get around a lot of the time,especially if I wanna go shopping or to the doctor’s office.The cognitive effects combined with the severe physical challenges of this progressive degenerative disease is brutal–there have been days that I didn’t know how to read or write,where I was,who I was, or what I was doing.It forced me to abandon my dreams of finishing college and becoming a teacher or an interpreter.ON the bright side,though,this life-threatening catastrophic illness that has tried many times to take me out of here has caused me to appreciate the simplest of gifts–a holiday spent at home and not in the hospital;the gift of what sight i have remaining;the days that i can swallow good;and the celebration of having survived another year when no-one expects you to.I hate mito–it really really is horrible and I would not wish it on my worst enemy,but if you fight back,no matter how small,then no disease,no matter how rare,can change you deep down.You are still you,no matter what your body does or how it betrays you.Don’t ever give up and always keep fighting!:)
“Alone we are rare,but together we are strong!”