A New Beginning

On the second of July 1996, I was born with Netherton syndrome.  Doctors had observed and predicted I wouldn’t make it past the age of three.  They also thought that I would be put on tube feeding for the rest of my life.  I’m glad to say …they were wrong. 

Now that I look back after sixteen years, I realize how simple it could have been for me to die rather than live.  I mean I could have been with the others that didn’t make it, missing the experiences this world offers.  But my life must have been, and is, pre-destined.  There must be a reason that I’m alive and writing this to you today.

Throughout my life I’ve always wondered why I was born this way.  There are so many kids with “normal” skin.  They always seemed like they were happier than I was, along with their friends.  It was tough. Everywhere I went kids my age, and younger, stared at me, saying things like “Mommy why is his skin red?” Or maybe something like…“Wow he is so red!”  These things really hurt me inside, lowering my self-esteem and confidence by a mile.  I just couldn’t seem to find any good that came out of my life.It hurt me more so when I was with my friends outside; watching my friend’s reactions to all the people staring in their direction, knowing the people were actually looking at me.

It was only in 2012 that things changed a lot for me.  I came to focus on all the good in my life, as opposed to the bad.  I started to see all the pieces fit together for my benefit.  Sylvester Stallone said in his movie Rocky,

“Let me tell you something you already know. The world ain’t all sunshine and rainbows. It’s a very mean and nasty place and I don’t care how tough you are it will beat you to your knees and keep you there permanently if you let it. You, me, or nobody is gonna hit as hard as life. But it ain’t about how hard ya hit. It’s about how hard you can get hit and keep moving forward. How much you can take and keep moving forward. That’s how winning is done!”

It was as if the sun appeared after years of rain and storm.  This all happened when I surrendered and faced the fact that this was how I was born.  In simpler terms, my mind-set completely changed from going on reverse, to accelerating a hundred miles an hour ahead.  I felt like what should’ve taken me years to figure out, happened in only a small portion of that time.

Let me just embolden you to not look back to yesterday, look to your future.  There’s a saying, “yesterday was history, tomorrow is a mystery” - look forward and never return back to the old.  Instead, pursue the dreams that have taken root in your heart.  It’s never too late to change.  I promise you’ll never regret it. 

Currently, I am in grade eleven in my school at Lions Gate Christian Academy.  I’ve been playing the piano for almost nine years now and have a black belt in kickboxing.  I know I’ll go on conquering obstacles, continuing to walk in the fullness of blessings, and you will too.  Shake off the misery and unhappiness.  Start each morning giving thanks for all the good in your life.  Believe and hope that something awesome is coming your way.  I’ve learned, just before something great happens in life, there are usually hardships and obstacles we face.  When those thoughts come to you, don’t meditate on them.  Your future is too bright to waste on negativity and low confidence level.  If you focus on all the good in your life, believing for the greatest, then I know and declare: dreams will come true, healing will take place, and that all of you will become world-changers.  Your best days are yet to come.  This is a new beginning, a new chapter in your life.  God Bless you.

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Neither FIRST, its Board of Directors, Medical & Scientific Advisory Board, Board of Medical Editors, nor Foundation staff and officals endorse any treatments listed here.  All issues pertaining to the care of patients with ichthyosis should be discussed with a dermatologist experienced in the treatment of their skin disorder.

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