I spent a recent night chatting during a beautiful Florida evening of thunderstorms with some new friends, Stephanie and Molly McCann.  I was fortunate enough to meet this amazing mother/daughter duo through one of my neighbors, Pam Bartow.  Pam, as any good grandmother would do, was bragging about her granddaughter, Molly, and all she has accomplished in life, despite being a teenager with epilepsy.  Pam told me about her daughter and granddaughter’s willingness to share their story and advocate for others with epilepsy.  I knew immediately I needed to meet this girl and her Momma!

 

It is their story that gave me the idea to feature every day, extra-ordinary kids who are living life with chronic illness, on our foundation website, so others can learn from real life stories of kids with disabilities.  Not only do I hope these monthly segments will educate medical pre-professionals looking to focus on pediatric disabilities, but I also hope their stories, along with ours will encourage other kids and their families, facing similar life situations. 

 

Now let’s meet Molly McCann.  Molly is an intelligent, witty, athletic and outgoing 17 year-old, soon to be high school senior.  She is an accomplished state cross-country and track runner, who has spent much of her summer visiting colleges to explore her options as a runner and scholar.  As any other teenage girl, Molly has begun looking at colleges and wondering what life will be like after high school.  For Molly though, she may have to consider more than most students her age.  As Molly also happens to live with epilepsy.  The Epilepsy Foundation describes epilepsy as a “neurological condition affecting the nervous system.  Epilepsy is also known as a seizure disorder.”  For each person, this diagnosis is unique to them – that is true for Molly as well.

 

The Diagnosis

 

It was all rather fortunate, if you can view a diagnosis as that, the way it unfolded.  You see, just a few short years ago, when Molly was in the 8th grade, she was doing what most teenage girls do – having a slumber party at her friend, Rachel Rumana’s house.  Molly and her friends had just finished midterm exams and stayed up late talking, watching movies and texting friends.  The next morning, Molly’s friends noticed something was off, as Molly was texting someone and asked how to spell a simple word….and then she began to shake – she was having a for grand-mal seizure.  Rachel ran to get her father, who also happens to be a neurosurgeon!  Dr. Christopher Rumana knew exactly what was occurring for Molly and calming kept an eye her whiling calling ahead to the Emergency Room that they would be bringing her in.

 

All the while, Rachel’ mom was calling Molly’s parents to let them know what was happening.  As Stephanie, Molly’s mom, remembers what it was like when she rushed into the Rumana’s house with her husband, “seeing your daughter like that – that is something you will never forget.”  But Stephanie was grateful to see her daughter was in good hands as Dr. Rumana had already got things ready for Molly to head to the hospital to begin testing.

Molly doesn’t remember much about that day, but her mom does.  Stephanie said she and her husband were shaken.  It was not something you would expect to happen to your otherwise healthy and active daughter.  Molly was taken to the ER where the next several hours were a blur of EEG’s, CT Scans and MRIs, all looking at how her brain was functioning. 

 

It was a scary time for the family as they had never faced anything like this – it was their daughter’s brain after all!  Usually patients are not diagnosed with epilepsy until they have had a few seizures, as this allows doctors to see a pattern in the brain waves, however, Molly’s EEG( a test that measure these brain waves) showed that she had significant abnormal spikes outside the parameters and this required Molly to start medical treatment for the seizures immediately.     

 

In addition to the grand-mal seizures, Molly also experiences absence seizures.  These are short periods of time of “blanking out” for the person.  On lookers will notice someone with an absence seizure as staring off, unaware of what is around them.  “In hindsight, I wonder if Molly had been having these for a while.  It is hard to know when they are occurring if you don’t know what to look for,” Stephanie commented as they remember those early years in facing Molly’s diagnosis.

 

It is true in the early stages of a new medical diagnosis, there is so much unknown and as a parent you begin to wonder if you missed the signs of something earlier.  But for Stephanie, she took it upon herself to learn as much about her daughter’s condition as possible!

 

Support System and Advocacy

 

Not only did Stephanie educate herself on epilepsy but so she also educated Molly’s school nurse, teachers and coaches on her specific symptoms and course of treatment.  As Stephanie said, “everyone was amazing with us.  They have been really supportive and encouraged Molly throughout this.  We have super supportive friends.  The schools are great and called me when she had an episode.”

 

Molly added, “Yea, even people I didn’t know well, but were friends, because it is a small school, were great.  I remember Jake, he saw me in the hall after I had been diagnosed, and thought I looked confused.  He took me to a teacher’s classroom and they called my mom.  I remember I ‘snapped out of it’ and wondered how I got there!”  Molly and Stephanie went on to explain that not everyone is surrounded by such support.  Other kids Molly has met have been teased and bullied for being different, and this family knows they are blessed to have such great family and friends and a school that will work with them. 

 

In the beginning of all this, Molly worried she wouldn’t be able to run again, or at least run as fast as she used to.  You see, Molly found her much of her identity in being a state-ranked runner and she didn’t want to lose that just because she had been diagnosed with epilepsy.  So Stephanie and her husband, educated themselves and Molly on epilepsy.  As Stephanie said, “she was 13, she needed to take back control of her body.”  Her mom did mention that there was little information out there on her daughter’s condition.  “I had to go on to numerous websites and really research it to find out what I could do for my daughter.  The CDC was a great resource of information.”  Molly’s parents became strong advocates for Molly and in turn taught her to advocate for herself. 

 

As Molly and her family found themselves having to do a lot of research for themselves on epilepsy, they wondered what other families facing similar situations were doing.  Molly’s close friend, Rachel, decided to start a foundation, Strides for Seizures, that raises money to purchase resource materials on epilepsy for their local hospital.  As Stephanie said, “we hope other families won’t have such a struggle finding information to help them when they are newly diagnosed.” Molly loves being the face of Strides for Seizures.  “I don’t mind sharing my story.  If it helps someone else…then that’s great.  I want to be a voice for others with epilepsy…If I become a professional athlete, I can use that as a platform to talk about living with epilepsy.  If I can’t, then I still want to a voice for epilepsy.” 

 

In listening to this mother and daughter, I can see the love and respect they have for each other and the bond they have formed through this life challenge they are facing together.  They are both active in being advocates for others.  Stephanie serves on the Board of Directors for The Epilepsy Foundation of Florida.  She and Molly have started an Epilepsy Awareness Day at her local high school, which is now an annual event that educates others on this disorder.   Molly was also chosen to represent the state of Florida as their teen representative at the National Speak Up, Speak Out event in Washington D.C.  She, along with her mom, were able to walk on Capitol Hill and give her voice and her face to life with epilepsy. 

 

Molly and Stephanie are working together to take the stigma off an often not talked about condition.  Molly mentions, “Like that movie, World War Z – it is a zombie movie that have these people having epileptic seizures and then turn to zombies.  I boycotted that movie.  It gives a bad image of what a person with epilepsy is like!”  Molly and her mom both work to bring awareness to seizure disorders and paint the condition in a true light – epilepsy is a serious condition that should not be mocked, but is treatable and you can live a full life despite the diagnosis.

 

Not that epilepsy is without its worries.  Did you know more people die from complications from epilepsy than from breast cancer in the United States?  I wasn’t aware of this.  This is why it is so important to be educated on the condition and find the right treatment for your body.  Stephanie explained, “It can take time to find the right medicine that helps control the seizures with the least amount of side effects.” 

 

Molly’s doctors have also given her a laundry list of things she can’t or shouldn’t do.  A few include, you can’t swim alone, you shouldn’t go snow skiing, can’t be around strobe lights, can’t get dehydrated, can’t run on a few hours of sleep… and so on.  Does Molly always follow those rules? No.  After all she is a teenage girl, who like everyone else her age, wants to be treated normally.  Molly did chose to go on her class ski trip this year.  “I didn’t want her to go, but she needs to make her own decisions now that she is growing up.  She knows the risk she is taking.  She could fall and hit her head and have a seizure.  I am required to report that and she would then lose her driver’s license, which is a big deal.  You have to then be seizure free for six months and reapply the paper work.  But those are decisions she has to make now.” Stephanie said. They work as a team to normalize Molly’s teenage years.  Since Molly chose to go on the trip, she was required to have two safe people that stayed with her.  If something happened while skiing, one friend would stay with her and one would go for help.  It’s a balancing act, keeping Molly safe, while letting her just be a normal kid. 

 

I found myself, enjoying my time with Molly and Stephanie.  As they talked and shared their story, I had to smile as I saw the two of them banter back and forth over how they make decisions on what activities Molly CAN do and how Stephanie can be okay with that.  These two have a bond that would be strong otherwise, but in having to face a significant medical condition, it has brought a unique connection to them that is seen by anyone who meets with them.  As we tried to wind down our talk, I asked the ladies a few questions as it relates to Molly’s diagnosis.

 

Question and Answers

 

Stephanie, what are some of your worries for Molly as she deals with life with epilepsy?

 

“I worry about the long-term effects these drugs have on her.  These are medications that slow your brain activity!  I think that is important for people to realize.  Molly is in a college preparatory high school.  It is important to understand she can’t focus as much and it takes her longer to do things sometimes because the medications that are keeping her seizures at bay are slowing her brain function down.”

 

Would you consider medical marijuana if it were legalized?

 

“Absolutely! I have heard from people that use CBC with little to no side effects.  While the current drugs that treat epilepsy can have significant side effects. I worry what that will do to her brain long-term.”

 

Molly chimes in on this question, “I don’t know if I would change medication right now.  I worry I would go off something that is working and would be scared to have a change.”

 

Do you have any worries as Molly prepares to leave for college in a year?

 

“Of course.  Mainly the making sure there is a local pharmacy that she can get her medications from.  We will have to find a local neurologist in case she needs something.  I would love for her to go to a college that has its own medical school on campus.  That would be great.  But I have other kids and I worry about them too.  I have normal fears with kids leaving for college soon (Molly has a twin brother, Joseph, leaving next year too), you just add those medical issues in and …..”

 

I am trying to let Molly be in more control of her medicines and things like that this year so she will be ready when she is living on her own.  I have tried to teach her to be her own advocate.  I hope that helps her be ready.    I have Sean-Pat (her 13-year-old son).  I coach golf.  I volunteer for the Board.  I’ll stay busy – but I will still worry.  I will worry about them differently.”

 

Molly, do you have worries about growing up with epilepsy?

 

“I use to worry it would effect my running.  I worried I may never go pro.  I would be so sad thinking I couldn’t be as fast as I used to be.  But I also knew I wasn’t ever going to give up.”

 

Stephanie adds, “with each race, she was proving to herself she could do it- she could still run.  She was still fast!”

 

Molly continued, “It has effected some of my seasons.  Like last season, I had to change medication and that set me back.  But I know I am a runner and I will keep going.”

 

Stephanie quips in, “I have a worry.  I don’t like when she runs alone and doesn’t carry a cell phone.”  Molly explains real runners don’t carry cell phones and a debate ensues on whether Molly should start carrying one on her solo trainings.  I have to agree with Stephanie on this one – sorry Molly!

 

Do you have other worries, now in your life?

 

“Not really.  I am pretty laid back about that.”  Stephanie laughs and agrees that Molly doesn’t worry about the future like she does as her mom.

 

Molly continued, “Yea, but I am still a kid.  My twin brother can drive for me, I don’t have the same worries as an adult living with epilepsy.  Like Ms. Culpepper.  She is a good example – she has kids and all.  It feels better to see adults living a normal life with epilepsy.  That made me feel better, knowing I can be a mom one day.

 

Do you have any worries about going off to college on your own?

 

“No not really.  I will let my roommate know about my epilepsy.  I will find a safe person I can count on when I need something.  I will stay up on my meds.  I will have to remember to stay hydrated and get good rest and all.  But I am looking forward to college.”

What do you want to be when you grow up?

 

“Well, I would love to be a professional runner.  I could be an advocate for the Epilepsy Foundation and give my voice to something I live with.”

 

Stephanie adds a thought, “She has a story to tell, living with epilepsy.  It’s her story to tell and she is good about that.”

 

“Oh and if I become a professional runner, I would love to make it to the Olympic Trials.  I love the gear in running.  I would love to have Nike sponsor me.  I have always worn Nike!” We all laughed a little on that comment.  “I would also love to be a cast member on Saturday Night Live!  I have always watched that show.  Wouldn’t that be fun!  But for a real job, I am thinking about going into communications and marketing.  I want to work and have a family”

 

I can see her doing that – she is already sharing her voice with others!

 

You are both fun people to be around, do you find you use humor in coping with your medical condition?

 

Stephanie – “Use humor? Oh definitely!  You have too!”

 

Molly - “Yea, I joke about having the “Eps” and all and we can laugh about it….but only us.  It’s not funny when other people joke about epilepsy and I never joke about seizures.  Seizures are not funny. They are serious and need to be treated as that!”

What advice would you offer medical professionals or those looking to go into pediatric medicine when working with kids with epilepsy?

 

Molly was quick to answer, “He (the pediatric neurologist) didn’t describe it much to us in, like, in normal words.  I went to school the next week after being diagnosed, thinking I have epilepsy, but what is that?  I would have liked it explained in terms I understood at the time.  And try to make it more fun when you’re with the kids.  Doctors are always so serious!  Focus on telling us what we CAN do and be more up beat!”

 

Stephanie gave the mom’s perspective on this one.

 

“Reassurance.  Reassurance that it is going to be okay!  Especially when its all being first diagnosed.  Anytime you hear these things about your child….I wanted to hear what does this mean for her?  What does this mean for us?  How does this change our life?  When something this major effects one child, it impacts the whole family!  Yea – maybe just more reassurance that it will be okay.

 

Also I want to know what this really means to my child and her specific issues.  I don’t want to just hear what the textbooks say.  And use words to that make sense to the kids hearing this.  It’s their body and they need to understand what is happening to them.

 

Finally, doctors never told us the fun stuff – things like Camp Boggy Creek.  The opportunities for kids once diagnosed, like the D. C. trip and other things where they can meet kids facing similar medical issues.  For kids to learn they are not alone.”

 

Sage advice from a teenager and her mother who are living life with pediatric disability.  It is my hope sharing their story will encourage others facing similar life circumstances. It is also my hope that their words will put a clearer face on pediatric disabilities – especially as it relates to epilepsy. 

 

Thank you Molly for being our first Extra-Ordinary Kid (or Teenager in this case) to be featured on The Halle Grace Foundation website.  Thank you Stephanie for providing us the parent’s perspective to raising a child with a chronic illness.  You are both making an impact in other’s lives.

 

For more for information on Molly and Rachel and Strides for Seizures:

https://issuu.com/tallahasseewoman/docs/spring_summer16talteen_online

 

For more information on epilepsy:

The Epilepsy Foundation -   http://www.epilepsy.com/

The Center for Disease Control and Protection – Epilepsy -  https://www.cdc.gov/epilepsy/index.html