Sunday, November 18, 2012

What Epilepsy Means to Me: Julie Hutchison and her daughter, Chelsea

The stories here during Epilepsy Awareness Month have all touched my heart in some way. I find the epilepsy community – those with it, their caregivers, family and friends as well as supportive “outsiders” – to be inspirational, tenacious and giving.

Chelsea’s story is all those things and more and her story has brought me to tears. Maybe it’s because I have two daughters now in their early twenties but who were goofballs through their teen years, much like Chelsea. It might be because of the extreme admiration I have for Chelsea’s family who are driven to help others even after experiencing an unthinkable loss. Their anger and grief turned to advocacy and action through their Chelsea Hutchison Foundation.

My heart is touched by these stories and they are an inspiration to me every day.

I hope they are to you too.  

Robert’s Sister: When was Chelsea first diagnosed?  Tell us about the process of getting the diagnosis. 

Julie and her daughter, Chelsea - such love!
Chelsea had her first seizure at her 11th birthday party.  Her "suite" was in our finished basement and we had decorated it with strobe lights and disco balls.  She had a group of eight girlfriends over for the night.  Chelsea was known for being very dramatic and theatrical and about an hour into their celebration, a couple of the girls came running upstairs saying Chelsea was pretending to have a seizure and they didn't think it was funny.  They wanted me to stop her. It didn't take long to realize she wasn't pretending.  Needless to say, that is a quick way to end a party.  A couple of the little girls had to go home, but five of her friends lined up under her while she was on the couch in our upstairs family room for the rest of the night.  I was so touched by those who stayed.   
 
Robert’s Sister:  Tell us about the information (or lack of information) the doctors gave you about epilepsy when Chelsea was diagnosed with and then treated for epilepsy.  
 
My mother started having occasional seizures when she was about 60.  It was never determined why and they were so seldom, that she was not medicated until she had a seizure in the bathtub and seriously hurt herself.  My mother passed away in 2007 and when I found her, it was obvious that she had experienced a seizure.  I went to both my mother and Chelsea's neurologists to ask if we had anything to be concerned about with respect to Chelsea's seizures. In both cases, I was told no.  That it most likely had something to do with my mother's age (77 at that time) and her heart.  We went along our merry way; just dealing with Chelsea's occasional seizures as a minor inconvenience when less than two years later, a seizure took Chelsea's life as well.  I was there asking for the information and was not given any.
 
Robert’s Sister:  How did you feel when Chelsea was first diagnosed with epilepsy? 
 
Sadly, our neurologists never referred to it as epilepsy, but as a seizure disorder.  It wasn't until I asked for copies of her records that I saw the word.  Epilepsy was not discussed in my mother's case either.
 
Robert’s Sister:  Did your family treat Chelsea differently after the diagnosis?  If so, how?  
 
We were truly blessed by our family and close friends.  No one treated her differently at all.
 
Robert’s Sister:  Did the kids at school treat Chelsea differently because she had epilepsy?  
 
Her friends were wonderful to her.  While I'm sure there were things said that Chelsea did not hear, her friends held her close and protected her.  I remember Chelsea being somewhat offended by a comment a teacher made in general about "causing a seizure." The next day Chelsea faced that teacher and told her that she did not appreciate the comment and that seizures were nothing to joke about.  I was so proud that she dealt with that so head on.
 
Robert’s Sister:  What treatments did Chelsea try?  How did they affect her?   
 
Chelsea had been on Zonegran, Lamictal, Keppra (briefly) and Depekote. While I believe she was most stable on Lamictal, they were always looking for that one medication that would keep her from having break-through seizures.  She averaged only 4-5 tonic clonic seizures a year, even went an entire year without having a seizure.  She did have minor absence seizures daily, but they didn't really affect her.  She maintained (almost) straight A's.
 
Robert’s Sister:  Tell us about your Chelsea Hutchison Foundation – how it started, how it has grown.   
 
Losing a child is not something you ever plan for.  When we lost Chelsea, people wanted to make donations to a cause in her memory, and we were in no shape to make those decisions.  We set up a memorial fund, knowing we would someday want to do something special in our precious girl's name.  As months passed, Chelsea's love for dogs kept surfacing.  When we learned that there were service dogs that could aid those living with epilepsy, we knew that was where we would start.  In addition, the more we knew and began to understand about SUDEP, we knew we had to speak up and keep other families from being blindsided.  We did not have the energy to "take on" the medical professionals, so we chose to gently raise public awareness. 
 
Our first fundraising event was in April, 2010 when we invited friends and family into a small neighborhood restaurant for dinner and a silent auction.  We packed the place and raised our first $15,000.  That fall, we orchestrated Chelsea's 1st SUDEP Awareness Walk in Littleton, CO and raised another $15,000.  Our Annual Gala takes place each year in April - the month we lost Chelsea.  We do that to keep moving during that difficult time.  Chelsea's Epilepsy Walk for SUDEP Awareness takes place in September, Chelsea's birth month (for that same reason) and has grown to include four states (CO, VA, MO and KS) and we have virtual walkers and teams across the US.  This past September, we gratefully raised $50,000.  We have been contacted by others and it is possible that Chelsea's Walk could be in 7 states in 2013.   A dear friend has reserved 48 cabins for Chelsea's Cruise to the Yucatan in June, 2013.  We are hoping this will also become a yearly event to raise awareness.
 
Robert’s Sister:  What is your mission with regards to epilepsy? 
 
To save lives and to bring some peace and support to those families dealing with all that goes along with seizures and epilepsy.
 
Robert’s Sister:   How has epilepsy affected your life? 
 
Ugh.  Losing my daughter has changed me forever.  Losing my mother was excruciating as well, but on some level, you know you will probably lose them at some point - at least you are somewhat prepared.  Losing a child and believing if we had known to be concerned we might have been able to save her is beyond words.  I HATE EPILEPSY!  I don't want ANYONE ELSE to ever know this pain!
 
Robert’s Sister:  What is your favorite memory of Chelsea?    
 
I could go on from now until the end of time talking about my favorite memories.  She was such a character and so creative.  She would light up a room anytime she entered.  A few months before we lost Chelsea, she had become somewhat unstable during a medicine change.  So much so that she was afraid to leave the house and especially afraid to go to school for fear of having a seizure and "embarrassing herself."  Her school offered her a home-bound study program and it was such a sense of relief for her.  During the stress of what she was going through, I remember her telling me that while what she was going through was hard, she loved having the extra time with me.  Sigh!!  She was quite a Disney Princess and typically in character.  When she was very little, I walked down the hall to find her lying on the floor with her feet crossed just outside her bedroom.  She was cranking her head around to see me as I approached her.  I asked her what she was doing and she told me she had been waiting for me to help her.  You know, mermaids can't walk and she needed to be carried into another room. 
 
Robert’s Sister:  What do you want people to know about epilepsy? 
 
Be your own advocate!  Know that seizures can be more than a little inconvenience and don't let any doctor treat you as though you are being overly protective.
 
Robert’s Sister:  Is there anything else you want to say?  
 
While I would give anything - ANYTHING - to have my daughter by my side, I have to say that I have met the most amazing people through this journey.  While many of my friends have been there for me through thick and thin, my address book has certainly changed.  I look at each and every one of the amazing people I have met through this loss as gifts from Chelsea!!
 
Robert’s Sister:  Please tell us how we can contact and support your organization.    
 
We are constantly fundraising to be able to help more people.  To date, we have provided 43 grants for seizure-response dogs, 82 Emfit monitors and 7 SmartWatches.   We welcome any type of participation you are willing to provide. [Editor’s note: For more information, please visit The Chelsea Hutchison Foundation at www.chelseahutchisonfoundation.org]
 
Robert’s Sister:  Thank you, Julie, for sharing Chelsea with us.  She has touched my heart and am sure many others will benefit from knowing Chelsea’s story and from the great work your organization does. You are an inspiration.  

Each day in November we will have a new story about someone affected by epilepsy telling us “What Epilepsy Means to Me.”  Check back tomorrow for our next story!  If you’re interested in telling your own story about epilepsy, please contact me at robertssister@att.net.

4 comments:

TG Bears said...

Julie is truly an inspiration. I am privileged to work with her.

Gina Restivo said...

Love Julie and Doug and Chelsea!! I will forever be inspired by what they have done with this loss. Chelsea is making a difference for a lot of people around the world.

Epilepsy EC said...

I love them <3 They are wonderful people, doing wonderful things for amazing people all over this country. I am truly inspired by what they do, each and everyday. Chelsea, you are so loved and and touched so many lives.

Trish Hughes Kreis said...

Count me as one of those inspired by Julie and her husband. They are amazing and have helped so many. Chelsea will continue to change lives for a very long time. <3