Hope is a Journey….

Shine On

How do find the words to sum up the life of someone who was so beautiful, inspiring, and courageous in just one post?

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I don’t know if there truly is a way do this fully – but I am going to give it my best. 

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Today marks one year to the day that Leslie Cora Whitt-Williams took her last breath on this earth.  To honor her, I wrote this song and am dedicating it to her memory.

Leslie (Whitt) Williams and I met in 2010 on a trip down to Georgia to see a specialist.  I had been talking with her and her mother via Facebook prior to that, but we finally got the opportunity to meet – and it was a time I will always cherish and remember.

It’s SO hard to believe that it has been a year since Leslie was taken from us because of Mitochondrial Disease.  Every time I think about it, my chest gets tight, the tears well up, and I feel like I can’t breathe.  She was so full of life, love, and spirit…..so much spirit!

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Leslie’s journey really began in June 2007 when she had just turned 19. She was 10 1/2 hours away from home in the mountains of Boone, North Carolina working at a summer camp as a camp counselor for mentally/physically handicapped children and adults. Her mom received a call from the camp director that they found Leslie unresponsive with lips blue, no pulse, and blood sugar of 19. They loaded her up into the ambulance headed to a very small medical center where they had no idea what was wrong with her. They felt she had diabetes and wanted to admit her for testing but, since she was so far away from home with no one there-  she wouldn’t let them. Her mom went down to NC the next day to pick her up because the camp director didn’t want her there if they didn’t know what was wrong and if it would happen again. That began the journey of trying to diagnose her. From there on she started having symptom after symptom and they went from doctor to doctor. No one could figure out what was wrong with her. In the meantime she was getting sicker and weaker. In January 2008 she was diagnosed with Mitochondrial Disease. She also was diagnosed with a secondary condition called Glutaric Acidemia type II.  The battle for Leslie was only to get more and more difficult…and heartbreaking.

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Leslie loved her family, cooking and baking even though she couldn’t eat (her gut was paralyzed due to the damage the Mitochondrial Disease caused in her body). She loved shopping.  It was the thing that she and her mother, Allisa loved doing together. She loved the beach and the ocean. She really loved volunteering whenever – and she did so wherever she could. She volunteered for the American Diabetes Association and other youth camps during the summer.

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Leslie’s dream was to graduate from college and become a Metabolic Dietitian and have a family. She married the love of her life – Jeff Williams on June 4, 2011.   It was a beautiful wedding followed by a wonderful trip to Ireland for their honeymoon.

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In October of 2011, she became very ill with urosepsis,  and that was when everything really started going downhill.  She lasted exactly 12 months from the date of that infection.   During that year she had to have countless blood transfusions, had to be put on oxygen 24 hours a day, had to have a foley catheter placed, and was on TPN 24 hours a day (and she still continued to lose weight).

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She also had a piece of brilliance come into her life when she was paired up with an amazing service dog, Billy.  He was a blessing for her….

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Billy helping get her sweater off

Leslie had a ‘Bucket List’ – here were a few items on it:

1. Find/Marry the love of my life.

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2. Travel to Ireland

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3. Graduate High School Valedictorian

Leslie on the local news because she graduated Valedictorian in 2006 with a GPA of 4.45

Leslie on the local news because she graduated Valedictorian in 2006 with a GPA of 4.45

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4. Graduate College –  Wanted it more than anything but never got to cross it off her list.
5. Become a Dietitian – Wasn’t able to make this happen, but it never stopped her from trying.
6. Visit all 48 land states (accomplished, but no pictures at this time)
7. Meet Cincinnati Reds players

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Leslie’s mom, Allisa and Leslie’s husband Jeff crossing this off the bucket list for her.

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8. Milk a cow

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9. Fold 1,000 paper cranes and make a wish

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Leslie wasn’t able to do this on her own, but countless friends made them and sent them to her.

10. Collect all 50 states key chains – Only one state left and it’s on the way!

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11. Compose a song with lyrics

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Song
12. Visit Grand Ole Opry in Nashville

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13. Meet Reba McEntire

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14. Ride in a blimp

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15. Visit San Diego Zoo

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On October 21, 2012 at the age of 24, Leslie passed away.
Heaven gained a very smart, beautiful and talented young lady that day.
At the time of her death her mitochondrial mutation was still unknown.

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Truthfully, Leslie lived more in her short (but very full) 24 years of her life than most people will ever live.  Leslie inspired me to keep fighting when things were hard, scary, or downright unfair.  She bravely and courageously fought until the bitter end.  Mitochondrial Disease may have taken her body from this earth, but it will never take her spirit and her legacy that she left behind for all of us to carry on.  If only this world had more “Leslie’s” in it….boy would it be a better place.

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Leslie’s mother wanted me to not only show how beautiful, amazing, and full Leslie’s life was, but she wanted me to share with you what Mitochondrial Disease did to her and took from her…

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Just a few days before she left this earth

Over the years, I have become close with so many families that battle with Mitochondrial Disease and Primary Immunodeficiency Disease.  Their lives, their fight, their love – it has changed me.  We become close, and – when someone in our community loses their loved one, we all feel it.   For me, the loss of Leslie hit so very close to home.  I think of her all the time.  Her mother and I remain friends and I often feel at a loss for words when she posts about her heartache, grief, and absolute sadness over the loss of her shining gem.  Truly, there are no words to quell this type of loss.  But, I hope in some small way that this blog post will bring her some comfort on this difficult day.

I don’t ever want this world to miss out on knowing Leslie – so, without further delay…

Meet Leslie:

Part 2

Part 3

Part 4

Whitt Sister Radio

I want the world to SHINE ON like Leslie did every moment of her life.
So, my challenge to you is to SHINE ON her legacy….SHINE it ON every person you meet.  It is a blessing and a gift to be able to carry a piece of Leslie with you – and, now that I’ve shared her with all of you, you can do just that.  You can SHINE ON her light everywhere you go.  Tell people about Leslie and her life – inspire them!

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And I could not finish this post without talking about one of the most amazing families I’ve ever come to know.  Leslie’s mother and I became close over the years…her dedication to Leslie is one that forever has burned a place into my heart.  The love that her entire family –  her parents, her husband Jeff, her sister Megan (and others) – just the love that they all shared – it leaves me speechless.

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Today (and every day), I ask of you all to send prayers of comfort and peace to Leslie’s family as they come to the year anniversary of her passing.

Rest In Sweet Heavenly Peace, Leslie.

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Comments on: "Shine On" (1)

  1. catholicmomof3 said:

    Great blog entry! Thanks for sharing.

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