Molly came into our lives February 7th, 2012, just under 24 weeks gestation, weighing just over a pound alongside her identical twin sister Melanie Elizabeth. Although her sister was unable to overcome their circumstances, Molly was immediately transported to another hospital, which had the means to support babies born under one kilogram.
Over the next five months, Molly hit her milestones until she was released from the NICU in Saint Louis with just an apnea monitor and supplemental oxygen. Over the next 18 months, Molly surpassed all of the doctors’ expectations - she flourished.
Unfortunately, one evening when Molly was two and half years old, I woke up to her unresponsive, fighting a tonic clinic seizure (status epilepticus). We do not know how long she seized that evening as she required a ventilator to help her breath after over two hours of seizing.
She was in a coma for over five days that trip; it was the start of a very new life for our Miracle Molly; a life living with seizures. Generally speaking, a diagnosis of epilepsy typically comes after an individual experiences two or more clinical unprovoked seizures. Molly was diagnosed after her third episode, all echoing symptoms of the first. Molly was forced to relearn the rules she detested so much of the children’s hospitals, experiencing extremely long seizures. Her seizures, although not every day, would last anywhere from 30 - 120 minutes.
With her medications, both daily and rescue being as strong on the central nervous system as they are, were known to place her into induced comas regularly. Molly quickly went from 1-2 daily medications, 2-3 daily medications, taken multiple times per day, in combination with the two rescue medications. Today, Molly’s daily medication amounts have reached what would be the mass dosage for adults.
As a brain surgery candidate at the University Iowa throughout 2016-2017, we made the difficult decision to transfer her medical care to UPMC Children’s Hospital in Pittsburgh, PA, and ultimately to the Cleveland Clinic in Ohio.
Although Molly has several other medical challenges waiting patiently in line for their turn to be treated (kidneys, skin, eyes), as of September 30, 2018, she has been seizure free.
After years of experiencing consistent bouts of status epilepticus in her left temporal lobe and seizures all day, hour and minute in her left occipital lobe, she endured 3 brain surgeries this past summer which removed both lives of her brain and answered all of our hopes/prayers.
We are now raising funds to make a difference in the lives of all individuals, just like our Miracle Molly, living with epilepsy. The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.
Please join us in supporting this cause by making a safe and secure donation to our fundraising webpage.
Giving to the Epilepsy Foundation means you make the world a better, easier, more manageable place for the 3 million individuals in the U.S. who are living with epilepsy and seizures.
Thank you for all you have done, do, and continue to do moving forward to help support individuals and their loved ones to combat this terrible disease 💙🦋.
To learn more about Molly’s story, feel free to visit her Facebook Page.