Project Description

Lena’s Story

Lena was so excited to make her debut in the world.  She actually sent me into labor 5 weeks early.  Although I spent 5 days in Labor & Delivery having contractions and trying to slow the contractions or dilate, we were able to hold off and finally deliver only 4 weeks early.  Despite this early arrival, Lena was a healthy baby girl whom everyone adored the minute she entered the world.  Although she was considered a preemie, she did not need to stay additional time in the hospital.

 

Lena was developing quite normal, she seemed to be hitting all of her milestones and was pretty much in the correct percentile during our pediatrician visits.  She being my first full term pregnancy, we were settling into a routine and everything was just amazing.

 

I will never forget the date….the date that changed our lives forever.  It was December 19th, 2007, Lena was just 8 1/2 months old.  I started back to work part-time and was lucky enough to have my sister available to watch her during the days that I worked.  I dropped my baby girl off that morning just like I had been doing for weeks.  About 5 minutes later while I was still in route to the office, my sister called and told me that I needed to turn around and come back.  You never expect the worse, I being a new mom, thought I forgot something, a toy, extra diapers, what was it? What did I forget this time?  But that was not the case, my sister’s voice so calm spoke those unforgettable words….”No Jenn, I really think you need to come back.  I think Lena is having a seizure.”  I immediately looked for a way off the highway and back to her house.  I later found out that during that conversation, Lena was not convulsing yet…however while my sister was changing her, she appeared to have a shiver, so my sister picked her up to comfort her and get her warm only to feel Lena stiffen in her arms.  By the time she hung up the phone with me to call 911, Lena had started convulsing, somehow my sister knew just what was happening in those early stages.  When I arrived, the ambulance was just getting there, too!  I walked in to see my little girl on my sister’s floor convulsing.  I can not explain to you how it feels to watch your child’s body go through this and to watch the blank stare that they have and to NOT be able to do ANYTHING for them!  They gave her oxygen as she started turning blue and we got into the ambulance.

 

In route to the closest hospital, this monster that took over her body was not giving up.  The paramedics met us along the way and we stopped on the side of the road!  They administered medicine to stop the seizure and for the rest of the ride I rode laying in the stretcher with my limp daughter on my chest.  That first seizure lasted about 20-25 minutes and was not caused by a fever…it felt like an eternity!  At the hospital, they kept us for a while and ran some tests, but sent us home as many of you may already know…they don’t really do anything for the first seizure.  We were to follow up with a neurologist within the standard 2 weeks. We never got to that first appointment…11 days later I received another phone call.  The monster had returned…this time it lasted for 30 minutes.  I met my sister, daughter and the monster at the hospital.  Arriving at the hospital before her was hard…pacing back and forth and checking in with the ER nurses asking where my daughter was because I hadn’t heard from my sister in a while and they should be there by now.  All I could think about was the last ride to hospital and how we were on the side of the road…Where were they?????  They finally arrived and out of the ambulance she came.  Her poor little body convulsing on the stretcher as she was wheeled past so many onlookers with sheer terror in their eyes.  Again, they gave her medicine to stop the monster. Because this was her second one…we were given antiepileptic drugs to start and stayed at the hospital for observation.  That New Years Eve, I rang in 2008 watching Dick Clark on a hospital T.V. with my daughter hooked up too all kinds of things and not having any answers as to why, what, or how long my little girl was going to have to endure this monster!

 

After Lena’s first 2 Tonic-Clonic(Grand Mal) seizures she went on to have 15 more so far.  Some I videotaped trying to help the doctors see what her body looked like as hers seemed to start on one side of her body with her leg, then move up when her arm would join in, across to the other side where her other arm would join in and then down to her other leg again until all were simultaneously moving in sync.  Lena went through a ton of different kinds of medicines and along the way around the age of 1, she started having 2 other types of seizures called Absence (also known as Petit Mal) and Myoclonic Jerks.  Even though she was not having the Tonic-Clonic ones every day, she was having the Absence and Myoclonic Jerks every day.  So now, we had to start fighting 3 different ones.  This poor child had been through so many visits to the neurologist, MRI’s, CAT Scans, Spinal Taps, EEGs (some 20 minutes long and some 4 days long) and blood work.  I also was running around with her big file of medical records getting second and third medical opinions.  We eventually landed with a Neurologist at CHOP (Children’s Hospital of Philadelphia) and I knew we were in the right hands.  Our initial visit was 2 hours long where she talked with us and observed her interacting etc.  The doctor said…I am thinking one of 2 different kinds of Epilepsy.   Finally, someone understood that we were not OK with an “just” an Epilepsy diagnosis and that we needed to know more.  We needed to find out what kind so that we could get a hold of it and fight it!  If you don’t know what kind of monster you’re dealing with, then you don’t know how to fight it.  Finally we had some kind of an answer around October of 2009.  We had done some genetic testing and the results pointed to Dravet Syndrome.  Dravet Syndrome is a rare type of Epilepsy where all forms of seizures can be resistant to medical therapy.  Given this diagnosis, we then knew that Lena’s battle with Epilepsy would most likely be a life- long one.

Some of the medicines that Lena has been on or is currently on:

Trileptal

Zarontin

Tegretol

Topamax

Keppra

Tranxene

Ketogenic Diet

Frisum

Banzel

Depakote

Zonisamide

Onfi

Diastat (to stop a Tonic-Clonic)

Clonazepam (to stop a cluster of Absence)

At the young age of 8, I have held her hand and seen her go through many tests, medication changes and special diets…all to try to improve her “quality of life”.  This little angel of mine is a strong girl and has a tremendous amount of support from family and friends that all want to help her fight this!  It was once explained to me that when a seizure strikes, it is like a lightning bolt that hits in whatever region in the brain that is being effected and causes an interruption in time for that person, causing some confusion and having to start their task over often times.  Imagine constantly being interrupted, having to redo moments.  It is with this in mind, that I say, We will NEVER give up HOPE to try to find a CURE for more moments.