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Hurler's Syndrome Awareness

Updated on September 16, 2014

Let's Raise Awareness for Hurler's Syndrome!!!

THIS LENS IS DEDICATED TO HAILEY & ANGEL ^^MAKAYLA^^ & TO FINDING A CURE TO HURLER'S SYNDROME!

What Is Hurler's Syndrome:

Hurler's syndrome is one of a group of inherited metabolic storage disorders in which the lack of an enzyme affects various organs and tissues, including the brain. Enzymes are proteins that play many roles, including to metabolize (break down) substances in the body. In metabolic storage disorders, the body lacks an enzyme needed to metabolize a substance, such as a sugar. Instead, the substance builds up in the body and causes damage.

http://marrow.org/Patient/Disease_and_Treatment/Ab...

Makayla & Hailey

Family Photo

Family

"dedicated to Hailey & ^^angel^^ Makayla"

  • This Lens is dedicated to two beautiful girls, Hailey & Makayla Chavers. They both were born with Hurler's Syndrome. We have had both the girls on our Prayer List for quite some time now and this whole time I thought that Hurler's was a type of cancer. I just found out that it's not cancer at all. I wanted to share the information that I've learned about Hurler's with all of you. Also, to introduce you to Hailey & Makayla - two beautiful lil' girls - one fighting Hurler's here on earth, and the other in Heaven With Jesus!!!

    Much Love Always,

    The Reich Family

    REMEMBER:

    F-ully

    R-ely

    O-n

    G-od

MAKAYLA

Hurler's Syndrome Links

Hurler's Information on Amazon

Thanks for Stopping By Today!

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    • profile image

      anonymous 

      8 years ago

      glad i visited this cite due to the fact that one of my friends grandchild has been diagnosed with hurlers and hes only 4 months old. trying to gather all i can about it. seems that its terminal though in all aspects which unfortunately is devastating to anyone but we still have hope.

    • profile image

      anonymous 

      9 years ago

      I am 25 and i have a brother and sister that sadly passed from the disease. Unfortunately, i didn't know them as my sister, Hayley, passed before i was born and i was too young to remember my brother Jason (as i was just passed a year old myself). They both died just short of their first birthdays. I'm glad Hailey is doing well and my thoughts are with you. Maybe my borther and sister are in heaven with Makayla watching over Hailey and all other children fighting this battle. Thought and prayers for the family x x

    • profile image

      anonymous 

      9 years ago

      I have a step-sister who has hurler's and is 54 years old. When she was diagnosed my parents were told that her life expectancy would be 15. She has all of the physical features of hurlers with no mental retardation. She is a miracle to me. We are currently researching knee replacements due to her severe ostio arthritis. Over the years she has questioned why and when she gets down I remind her of all the good things in life that she has to be grateful for and of the good things she does. Who knows what the Lord's plan is? I keep her active, she loves to read and we see a gp regularly. I hope my blurb helps and I welcome you to e-mail me at troxelcastle@yahoo.com if I can be of any inspiration.

      Prayers and wishes for strength through this struggle and answers to your prayers.

    • profile image

      anonymous 

      9 years ago

      My granddaughter was just diagnosed with hurlers she just turned a year old.. tomm july 13 going for evaluation for bone marrow trans.. I feel for you and enjoy your lil angel..

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