When your life suddenly is hit with a serious medical lightning bolt you look everywhere for answers. You look for a way to fix it. You cry, yell, scream, hate, even mourn the life you had before. You anxiously look for a way to get your previous life back – the life with the petty things you once fretted over.
This happened to my family five years ago when our 13-year-old daughter was diagnosed with epilepsy.
Epilepsy, the fourth most common neurological disorder, is non-curable. There is no magic pill or surgery.
My daughter and our family embarked on a journey of mystery and sometimes misery.
The disorder, we quickly learned, causes spontaneous electrical surges in the brain resulting in seizures. Seizures are sometimes seen as blank stares or sudden jerking and unconsciousness.
Like in many families, there is no reason what-so-ever for my child to have become afflicted with this. Yet, she is.
Once we pulled ourselves together and accepted the shock of this villain in our home, we got to work, researching, finding the best anti-seizure medicines and the best team of neurologists at Rush Epilepsy Center.
Our daughter, in the midst of just trying to be a normal teen, underwent any and every test possible to locate the source of the seizures. Through a series of CAT scans, MRIs, EEGs and sleep studies we learned that her seizures begin in her left temporal lobe then spread throughout her brain.
Her personal triggers, which vary for all afflicted with epilepsy, are lack of sleep, stress, illness – the perfect storm of stressors on her body. The weekend of her first two seizures, February of 2013, these conditions were all perfectly aligned.
We are blessed today that she celebrates three-plus years seizure free.
We are also fortunate that we are able to pay for all the tests, the best doctors and her daily dose of anti-seizure medicines that have allowed her to get her life back. And, by that I mean the simple things we all take for granted – she can be left alone without worry, shower, drive, go to school, hold down a job and be with friends.
For so many finding the cause of the epilepsy then affording the medications to control them is tricky – and expensive.
Medicines can cost hundreds, even thousands of dollars per month. Many do not have insurance.
Someone living with uncontrolled seizures often battles depression, isolation, anxiety, thoughts of suicide.
Uncontrolled seizures can lead to death due to a seizure causing a tragic fall, car accident or fatal heart attack.
However, epilepsy receives little to no funding. In fact, it is the least funded disease out there yet it claims more lives annually than breast cancer and traffic accidents. Epilepsy affects twice as many people as Multiple Sclerosis, Parkinson’s, Cerebral Palsy, and Autism COMBINED. Many patients go through an average of three medications before finding one to control the seizures. For some, their epilepsy remains uncontrolled indefinitely.
Here in McHenry County, I along with a few moms whose children also have epilepsy, are trying to help those who cannot afford their medicine or who many need transportation.
Please come out and join our heartfelt efforts at the first annual LouBird 5K stepping off at 8 a.m. Saturday Nov. 3. at Betsy Warrington Park in Huntley Il. All funds raised will stay in McHenry County and go to the Epilepsy Foundation office in Crystal Lake.
There are more than 3,000 people in our county living with epilepsy who are underinsured or have no insurance at all who receive important services through this local foundation.
The run is named after a little local 3-year-old girl named Larkin who was recently diagnosed with epilepsy. Her parents, like my own family, were disheartened and felt lost after their daughter’s sudden diagnosis. They, like many, have gone through a string of medicines to help Larkin and today are on their 6th. While it is a difficult and scary journey, they at least can afford all that it takes to help their daughter, but many cannot.
Please help us help them.
Please visit our website to learn more about LouBird and to sign up to run. https://loubird.org/
Feel free to contact me for further information on volunteering, sponsorship, or any other way you want to help our little, mom-driven grassroots effort.
I appreciate you visiting our story. Thank you to those who have already signed up to sponsor us. Your support means so much to so many.
To provide awareness and raise funds for medications and transportation for McHenry County residents living with Epilepsy
Thank you to our generous sponsors: Penske Truck Leasing, REDFIN Realty, Kumon, Kosta’s, Dynamic Auto, Cedar Preservation Specialists, CTI Technology, Wanda Lee Wombacher Inc., Beth Armstrong Berkshire Hathaway Starck Realty