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Jenni Chase

It's Rare Disease Day - and someone I love has one

 
It's Rare Disease Day - and someone I love has one

You've probably heard me talk about my dear friend, Alex Wales..."Big Al" as he is called by many.  We met backstage at a Rascal Flatts (Al's all-time favorite group!)  concert in 2009...the night before Alex was heading to Minnesota. He was going there to have a bone marrow transplant to help stop the progression of the very rare disease he has: Adrenoleukodystrophy. ALD is an inherited metabolic storage disorder. The affected gene in ALD is on the X chromosome and it prevents the body from being able to break down (metabolize) certain fatty acids. ALD typically effects young boys...about 1 in 20,000. It is a terminal disease.

I had lost touch with Al and his family...and when he (his mom, actually - Al can't move his arms and hands well enough to type) sent me this email on June 23, 2013...my life was forever changed.

"Hi Jenni!

It's Big Al, I met you 4 years ago in June at the Rascal Flatts concert the night before I left to go have my bone marrow transplant in Minnesota.

It's been exactly 4 years today since I had my transplant to try to stop my rare disease, Adrenoleukodystrophy (ALD) from spreading.  I can't walk any more, I'm blind now and I can't eat or speak very clearly but I am still fighting hard!  I am 13 now.  Will you play a song for me?  I would like to hear 'Stand' by Rascal Flatts, that song always helps keep me going.

Thanks Jenni, I love you and I always listen to you when I am at the doctor getting blood on iheart radio and I make my mom try to call and ask for songs and try to win tickets.  Ha ha!!

Love,
Big Al"

As I said, that email changed my life, in so many ways.

A few days later, I had an appearance in Manassas.  Alex's parents brought him to see me and that day, he became 'my boyfriend'. =)  For whatever reason, Alex has always liked me and my show...and boy, does that make me feel so flattered and honored!

After spending time with Al that day...I decided that I had a new mission in life: to raise awareness of ALD - and to do ANYTHING I can to keep a smile on Al's face. 

So, I started thinking about the upcoming Rascal Flatts show - and what I could maybe do to make it a memorable night for Al.  I talked to my boss, who agreed to get in touch with the band's manager.  And thankfully, the guys agreed to a special meet-n-greet backstage before the show! I was over the moon. I told Al's amazing mom Kathy about the plan...and when she told Al what would be happening, he flipped out, naturally!

At the show, Flatts' manager took Al's entire family into a dressing room...Gary, Jay and Joe Don came in - and they couldn't have been sweeter to everyone! They each put on a blue ALD bracelet that Kathy had made up...and they listened intently as Al's big brother Zach (who also has ALD but it's not 'active' yet) stood up and read a letter to them about the impact their music has had on Al's life (He listens to a Flatts song every morning when he wakes up and every night before he goes to bed). Their songs have helped pull Al out of the darkest times, when he was fighting for his life.  They have made him smile the biggest of smiles.  They just have, quite simply, brought him a lot of joy as he battles this terrible disease.

As the M&G was wrapping up (the guys chatted with Al and his family for 15-20 minutes!), Al asked him if they would be playing "My Wish" that night. Gary replied "Yes, but it'll be near the end, so you better stay for the whole show".

It had been a long day and Al was really getting tired...but he was determined to stay for the encore - and it's such a good thing he did! As the band came back out on stage, and we heard the opening strains of "My Wish", Gary said to the crowd, "Alex, this one's for you, buddy!"  His family and I screamed with joy, his mom and I hugged each other and cried during the whole song - and I am getting teary-eyed as I type this, thinking back to that special moment.

The whole concert was a magical, once-in-a-lifetime experience for Al - and I myself will never forget it, either. 

I have become very good friends with Alex's parents and his brother - I feel like a part of their family now...and I love Big Al with all my heart.  When I say that knowing him has changed me, I mean it.  He inspires me to live life to the fullest, to never give up when things get tough, to be brave and to do my best in every aspect of my life.  It saddens me greatly to know that Al's time here is running out...but I know in my heart that I will see him again, up in Heaven. 

Alex is one of the most amazing people I will ever have the privilege of knowing.  I hope you, too, get to meet him someday - and feel the love that surrounds him. 

Alex in 2009:

(photo: Kathy Wales)

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