Monday, August 26, 2013

Jenna's story and Extra Life: Video Gaming for a Cause

So I'm doing Extra Life this year.  It's an interesting charity that aims to raise money for various Children's Miracle Network hospitals by collecting pledges for hours of video game time on or around November 2nd.  The hospital I chose to support with my efforts is Cincinnati Children's Hospital Medical Center, which is near and dear to my heart because of all they've done for my daughter, Jenna.

Jenna's right hand, pre-transplant.  Xanthomas galore!
Jenna was born with a rare disorder called Alagille Syndrome.  It affects various organs, like the heart, kidneys, and liver.  With Jenna, it was her liver that was the major concern.  She spent the first three years of her life jaundiced and really, really itchy.  She would scratch herself enough to bleed at times.  Even in the summer months, she had to be clothed almost entirely from top to bottom to prevent her scratching herself bloody. She had pretty bad xanthomas, cholesterol deposits, all over her body.  They were so bad on her joints that she couldn't even close her fingers into a fist, for example.

She was evaluated for liver transplant at Cincinnati Children's when she was very little, but a lot of kids with Alagille Syndrome don't need transplant so we were initially hopeful that she would be okay with just medicine.  Alas, it was not to be.  She was followed closely by the liver care center and cardiology departments at Children's, and by the time she was about three, it was apparent that she would need a transplant if she was going to have any hope of a normal life.

On March 20, 2005, we got the phone call that a liver had been found for Jenna.  That next evening, the
Jenna, very happy 16 days post-transplant
surgery was performed by the talented transplant team at Cincinnati Children's.  It was probably the hardest thing Tiffany and I have ever been through, but the entire staff at Children's went out of their way to put us at ease.  The next morning, when I saw my daughter, awake for the first time with her new liver, she smiled at me and said, "Hi, Daddy," and I knew that she was going to be okay.  And it was all because of the gift of a new liver from another family and the expertise and care of the Children's staff.

Jenna continues to thrive and she still sees several doctors at Children's.  In some cases, we have chosen to have her medical care handled by Cincinnati Children's even though it's about 3 hours away from our home.  We have literally driven to Cincy for a single appointment that lasted less than a half hour before.  In addition to her liver transplant, she's had open-heart surgery at Children's and a couple of heart caths.  We have a few good hospitals much closer to us here in Huntington, WV, but nothing compares to the level of care and expertise we've found at Cincinnati Children's Hospital Medical Center.
Jenna today, happy and healthy

When I heard about Extra Life, I signed up for the chance to help out the hospital that has helped my family out so much.  Please take a few moments to check out my fundraising page and donate if you're able.  Alternatively, if you're a big video gamer yourself, feel free to join my team and help my family and I raise money by playing video games.  Your donation is tax deductible and all money raised will go directly to the hospital that the player you're sponsoring has chosen.



Thanks for taking the time to read our story, and thanks in advance for any support you can offer.

Cecil Adkins

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