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Karen Lynn Vidra, The Texas Tornado

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My Child Has Maple Syrup Urine Disease.: Gage's Story. (Part One)
By Karen Lynn Vidra, The Texas Tornado
Wednesday, July 22, 2009

Rated "G" by the Author.

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A little boy lives with a rare but serious health disorder; his story is told by his mother.

My son, Gage Heath, is six years old.  He seems healthy on the outside; looks, however, can be deceiving, for he has a serious disorder that can kill him if we don't follow strict dietary and medical guidelines.

My son has maple syrup urine disease (MSUD).  He apparently was born with it.  He seemed healthy at birth; however, a few weeks after his birth, doctors became concerned that he had something going on.  His urine smelled strange, almost sweet, like maple syrup.  He was immediately tested; it was found that he had maple syrup urine disease.

Because of his illness, he has to be on a strict diet free of amino acids (particularly leucine, valine, and isoleucine), monitored by a dietician and his doctors, and have frequent blood tests.  He has to stick to this diet, or else he could end up brain damaged and disabled because of the buidup of poisonous toxins that can destroy his kidneys and neurological functions.  He could also die.

It's that serious.

He has to drink plenty of fluids (particularly water) and make sure he doesn't get too dehydrated.  He also has to go to the doctor's if he becomes ill because so many variables can happen.

As long as Gage sticks to his diet plan, sees his doctors, and watches himself in hot weather and makes sure he has plenty of water/fluids, then he should be fine, which he has been (so far, knock on wood!).  He may have a serious disease; however, he is a very active, happy little boy who loves life.

Once in a while, Gage becomes sick enough to go into the hospital for monitoring/treatment of pancreatitis, kidney infections, or bladder infections; more often than not, he's as fit as a fiddle.  No complaints from him; he is one of the healthiest members of our family! 

Until our son was diagnosed with maple syrup urine disease, we had never even heard of it.  We then heard of a distant cousin, whose little girl had it.  We then saw the child; she was in a sad way.  Her parents didn't get her treated; now their daughter, age seven, is severely disabled, unable to do anything for herself.  She is in a wheelchair, can't talk or see, and requires twenty-four hour care.  She is a sad case and a harsh reminder of what could have happened to our own son.

Her parents are paying the price.  The child's name is Chloe Grace, and now her parents must live with the implications of having a child who is severely disabled, both mentally and physically.  She is just a little older than Gage, but seems more like an infant.

To see Chloe Grace like this only makes us realize just how blessed we are to have a healthy child, even with having this condition.  We are indeed fortunate, and we plan on helping our son in every way possible, to ensure a bright, happy future for him.

Like most six-year-old boys, Gage loves baseball and football.  He loves to watch "Scooby Doo, Where Are You?" on television, read, write, and go to school.  He is extremely smart, so much, in fact, that when school starts back up this fall, he is going to be placed in the Gifted/Talented class at his school; he is way ahead academically of his peers.

Gage also loves to jump on the trampoline, annoy his big brothers Marcus and Cody (they're eight and ten) and the family dog (in a good way), and go to church, where he sings in the children's choir every week.  He is an extremely active little boy; we coulnd't be prouder of him!

Well, Gage is calling me, so I will go for now.  I will write in here again with more updates about Gage in future postings.  Until then, this is his mom, Jericka Lee-Ann Westerbrook, signging off!  Take care and may God bless you always!

~Love, Jericka Lee-Ann, Gage's mom.  :)

*To be continued.*


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Reviewed by P. Michaels 7/31/2009
Karen, you must do some of research to find all these unusual diseases. Guess you are helping others to be aware of the little known ones that can be life threatening if ignored. Good story.

Patty
Reviewed by Mary Grace Patterson 7/25/2009
This is very enlightning . I've never heared of this disease and was interested in finding out more about it. Josh had some similar symptoms but waa never diagnoised with that!......M
Reviewed by Patrick Granfors 7/24/2009
How strange. This sounds like a form of diabetes. Patrick
Reviewed by Dallas D'Angelo-Gary 7/23/2009
I had no idea this disease existed, Karen. You are a wealth of new information.
Reviewed by Mark Lichterman 7/23/2009
My, God, Karen. As if there isn't enough bad stuff in this world that we know about. Now comes another that we couldn't even imagine. At least the children have a chance if their parents are aware and handle it properly.
As always, very good writing, Karen. Your friend in Southern California. Mark
Reviewed by Georg Mateos 7/23/2009
2009 and Bushy junior is out and stem-cells are in, various testings already done have indicated that faulty organs get as them should be by being directly injected. It will be a pancreas cure before Gace gets old.

Georg

Reviewed by Karla Dorman, The StormSpinner 7/22/2009
Another disease I'd never heard of - informative, educational, and very well penned. The many ways a child can suffer ... sad.

(((HUGS))) and love, Karla.
Reviewed by Felix Perry 7/22/2009
Good story, very informative, have never heard of this disease before so you made it very clear.

fee
Reviewed by Michelle Kidwell Power In The Pen 7/22/2009
Karen you never cease to amaze me with your knowledge thank you for sharing, I had never heard of this condition until now!
In Christs Love
Michelle~
Reviewed by Carole Mathys 7/22/2009
Interesting story line, Karen...a new one for me, I never heard of this illness...well done
peace, Carole~
Reviewed by JMS Bell 7/22/2009
I JUST WENT ON LINE AND READ UP ON THIS TERRIBLE DIEASE. I WASN'T EVEN AWARE THAT THIS IS ONE OF THE THINGS LOOKED FOR IN THE BATTERY OF TESTS THAT THEY GIVE NEWBORNS. THANK GOD IT FOLLOWED ITS USUAL PATTERN BY SHOWING UP SO SOON AFTER BIRTH AND THAT IT CAN BE CONTROLLED BY DIET. GOD BLESS YOU AND CONTINUE TO GIVE YOU THE WISDOM OF A CARING PARENT...CONTINUE TO PRAY FOR HIM AND HIS HEALING...ONE NEVER KNOWS. BLESSINGS AND THANKS SO MUCH FOR SHARING THIS WELL WRITTEN, INFORMATIVE STORY. JOYCE * HIS INSPIRATIONS
Reviewed by Paul Berube 7/22/2009
Nope, this is a new one on me too. Well written, Karen.
Reviewed by OnepoetGem *the Poetic Rapper 7/22/2009
never heard of this disease Karen, this was an education, good one, if any of us don't drink water we can get contaminated, my mom almost died because she wasn't drinking any water, cheers

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