Trey's Treasures: Birthday Post

Tuesday, April 21, 2009

Birthday Post

Here is a picture of Trey on his birthday – on his way to school. I told him he could pick his outfit and wouldn’t ya know, he picked his “BORN TO BE WILD” t-shirt…if that doesn’t send me a messageY I love you my little present and want you to know that so do so many others today and everyday as Linda so sweetly wrote~God bless you our little blessing, Mommy

Dear Trey....How wonderful your birthday is today, April 17th A birthday is a time for celebration - for surprises - yummy treats - balloons - presents lots of presents - everyone who loves you near and far is celebrating your very special day - because it is your day - but besides the great time and all the other great stuff that goes along with your birthday - it means something very dear - very cherished - very tender - so very heart felt and deep down within every single person - whose life you have come to know directly and indirectly and especially your very special Dad, Mom, brothers and families/s. Trey, you were brought into this world as a 'present' to your Dad and Mom and brothers - just like your brothers, Dad and Mom - We all are 'presents' from GOD ' each little soul brought into this world to teach - sometimes really big stuff and sometimes little stuff to each other - Sweet, Trey - housed in your precious body - with those gorgeous eyes of yours - your precious playful and endearing personality is a very special 'present' - because the day you were born changed the lives of every single person who knows you - because the day you were born every single heart and soul is praying to GOD - hoping and wishing and most of all BELIEVING - that the power of faith - BELIEVING in miracles will help you grow up to be even more of a 'present'. Trey, look at what you have already done in your young life - You are making people pray - hope/wish - BELIEVE in miracles - I would say Trey, your are quite the 'present' to all of us for look what you have already accomplished. I would say and I am certain I am not alone when I say this "Trey, you are teaching us all so much about ourselves as we are all touched by your presence. We are all stretching ourselves out of our comfort zones - We continue asking questions, Researching for answers -A 'Blog' has been tenderly set up to share all of your news - Dollar Bills are given and Thousands of Dollars are raised with fundraisers - and did I forget to mention 'Love' how each and every one of us loves and adores you in our own special way - however, let me tell you Trey - Without a doubt your Mom and Dad love you in a way that no one on earth could possible understand. They are the Champions for out of love they brought your precious soul into life and they -through their love for you - is bringing out the very best in all of us for you. Trey, you are quite the cherished, treasured 'present' ....

Happy Birthday and many more!!!! x0x0x0x0xx0 Linda

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WHAT IS MPS?

Mucopolysaccharidoses (MPS) is a genetic lysosomal storage disease caused by the body's inability to produce specific enzymes. Normally, the body uses enzymes to break down and recycle materials in cells. In individuals with MPS, the missing or insufficient enzyme prevents the proper recycling process, resulting in the storage of materials in virtually every cell of the body. As a result, cells do not perform properly and may cause progressive damage throughout the body, including the heart, bones, joints, respiratory system and central nervous system. While the disease may not be apparent at birth, signs and symptoms develop with age as more cells become damaged by the accumulation of cell materials.

WHAT IS MPS IVA?

Mucopolysaccharidosis IVA (MPS IVA, also known as Morquio A Syndrome) is a disorder characterized by deficient activity of N-acetylgalactosamine 6-sulfatase (GALNS) causing excessive lysosomal storage of keratan sulfate (KS). This excessive storage causes a systemic skeletal dysplasia, short stature, and joint abnormalities, which limit mobility and endurance. Malformation of the thorax as well as macrophage dysfunction in the lung likely impairs respiratory function and contributes to sinopulmonary infections. Odontoid dysplasia and ligamentous laxity can commonly cause cervical spinal instability and potentially spinal cord compression. Other symptoms may include recurrent infections, hearing loss, corneal clouding, and heart valvular disease. Initial symptoms often become evident in the first five years of life. Depending on severity of the disorder, age of diagnosis will vary. Many patients become wheelchair dependent in their second decade of life and undergo numerous surgeries to alleviate life-threatening conditions caused by the underlying enzyme deficiency.

The incidence estimates for MPS IVA vary widely, between one in 200,000 live births to one in 300,000 live births. Approximately 400 patients worldwide have been identified and tracked through the International Morquio Organization (IMO) survey. There are already more MPS IVA patients identified through this registry than there are MPS VI patients being treated with Naglazyme worldwide. Based on the number of identified patients to date, the prevalence of patients with MPS IVA appears similar to that with MPS I.

Quotes that INSPIRE

"Life isn't about waiting for the storm to pass. It's about learning to dance in the rain."

“The Will of God will never take you where the Grace of God will not protect you”

When God leads you to the edge of the cliff, trust Him fully and let go, only 1 of 2 things will happen, either He'll catch you when you fall, or He'll teach you how to fly!

Life may not be the party we hoped for, but while we are here we might as well dance!

May your Troubles be less,

Your blessings be more,

And Nothing but Happiness

come through your door.

Our suffering can make us more sensitive servants of God. People who have known pain are able to reach out with compassion to others who hurt. If you have suffered, ask God how your experience can be used to help others.

Beautiful One,
Just Believe...

Waiting may be the single hardest thing we have to do. In the Bible, waiting is closely associated with faith. Sometimes the words are used interchangeably. While we may not like it, waiting is a necessary part of the Christian life. What God does in us while we wait is as important as what it is we are waiting for. Waiting is not easy. It may bring pain. It will try us and test us. It demands patience. It exacts a price…

When our eyes are on the sunshine, the rain doesn't seem so bad. When our eyes are on the rain, even the smallest drop seems like a storm.

THE POWER OF PRAYER. I believe that God only gives three answers to prayer:

1. "Yes!"
2. "Not yet."
3. "I have something better in mind."

God still sits on the throne.You may be going through a tough time right now but God is getting ready to bless you in a way that you cannot imagine.