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Name : JoEllen d'Entremont
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Email Address : jo.dixon@ns.sympatico.ca
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URL :
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Where are you from? : Nova Scotia, canada
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Comments : I have a sister who has a 11 month old son waiting for a bone marrow donor. He has Hurlers.
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Name : Brittney
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Email Address : b_evans3@hotmail.com
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URL :
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Where are you from? : San Diego, CA
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Comments : I'm a grad student in Audiology. I am taking a class in Pediatrics this semester. We are doing a paper/presentation on a syndrome. Mine is Hurler's. It is so great to hear that Jenna is doing so well! She is SO precious!! I will continue to check in on he
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Name : Roxana
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Email Address : rocksis@hotmail.com
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URL :
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Where are you from? : Tennessee, USA
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Comments : I have read many stories about this type of disease. I am writing an essay on MPS I or Hurlers. Your site has helped me a lot. Thank you. I'm praying that Jenna will do well.
Roxana
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Name : Melissa Carter
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Email Address : starlette7@ureach.com
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URL :
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Where are you from? : Fort Worth
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Comments : I'm praying for you!
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Name : Lauren Clark
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Email Address : CrazyL311@aol.com
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URL :
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Where are you from? : Richmond, VA
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Comments : I am doing a project on Hurler Syndrome for my Biology class, while reading your web page it informed me about Hurlers Syndrome but yet made me want to learn more about the disorder. My love and prayers are with you~!
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Name : Mary Robb-Carter
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Email Address : CARTERKECMRC
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URL :
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Where are you from? : Willow Park, TX.
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Comments : My husband is a complete match to a 1 yr old boy with Huler Syndrome. He is going through the process quickly to become a Peripheral Blood Stem Cell Donor. I'm new to the Internet, yet so excited to easily find wonderful information about the Syndrome, th
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Name : Lindsey
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Email Address :
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URL :
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Where are you from? : Colorado
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Comments : I'm a fifteen year old student who was researching hurlers syndrome when I came across your site. Just wanted you to know that I prayed for you Jenna, and that God is going to bless you.
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Name : Karin Drescher
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Email Address : karin.drescher@utanet,at
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URL :
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Where are you from? : Austria
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Comments : I like to read your story, it´s like a part from my life. I have had a son, but he died on 31.12.96, he had MPS I - Pfaundler Hurler. He was a grandious child, although he was very ill. I wish that in future it is possible, to find a medicament for mps. G
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Name : Tammy Thompson
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Email Address : pectnt@yahoo.com
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URL :
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Where are you from? : Geoergia
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Comments : I was doing some research for my son on genetics and I came across your web page. You have a precious little girl. I am saying a prayer for you right now.
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Name : Danita Wampole
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Email Address : danita@mcgeenet.com
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URL :
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Where are you from? : Hubbard, Oregon
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Comments : Best of Luck to you all.
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Name : Dawn Bellamy
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Email Address : dbellamy@dingoblue.net,au
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URL :
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Where are you from? : Australia
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Comments : I saw your website while I was research a topic for a friend. Will you tell Jenna I live in Queensland Australia, in a place called Noosa, I have live kangaroos come visit and a naughty hen that marches through the house followed by my two baby cats, they
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Name : Dawn bellamy
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Email Address : dbellamy@dingoblue.net.au
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URL :
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Where are you from? : Australia
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Comments : You forgot to say that your daughter is beautiful, what lucky people you are to have a real live Fairy Princess living with you.
love and prayers from Aunty Dawn
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Name : paulo santos
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Email Address :
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URL :
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Where are you from? : leiria-Portugal
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Comments :
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Name : Sandy Colunga
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Email Address : GW_princess69@yahoo.com
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URL :
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Where are you from? : George West,TX
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Comments : A very pretty baby and wish the best of luck.
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Name : Necole and Lacey
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Email Address : SNecoleAnn
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URL :
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Where are you from? : Florida
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Comments : Lacey is 3and1/2 and she has Hurlers syndrome.
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Name : Amanda
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Email Address :
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URL :
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Where are you from? : IL
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Comments : this is a very touching story. It almost brought tears to my eyes. I am praying for Jenna and her family, for I am a christian too. Thankyou for sharing such a story during a tragic moment in your lives.
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Name : Val Draves
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Email Address : valdraves@hotmail.com
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URL :
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Where are you from? : Illinois
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Comments : I am a student a Georgetown Middle school,and have been assigned a project on Gargoylism, or Hurler's Syndrome. I came across your site and read the story. I pray for Jenna and hope God blesses her with life.
I was wondering if I could ask a few questio
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Name : Kitsy Jones
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Email Address : Skitsy@cookchildrens.org
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URL :
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Where are you from? : Cook Children's
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Comments : Just stopping by!
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Name :
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Email Address :
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URL :
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Where are you from? :
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Comments : God Bless You.
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Name : A Firefighter
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Email Address :
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URL :
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Where are you from? : Texas
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Comments : God Bless You.
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Name : Jeff & Michele Richardson
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Email Address : jrich@i1.net
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URL :
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Where are you from? : Park Hills, Mo.
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Comments : Our son under went a unrelated B.M.T. in Minn. Feb 8, 2000 for Hurlers. We will pray for Jenna.
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Name : Diana Malone
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Email Address : valkyrie2003@yahoo.com
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URL :
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Where are you from? : San Jose, CA
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Comments : Well hello darling. Been thinking about that almost 4 year old doll! Missin' y'all. Wish we could have you out here for a visit! Be sure to check the mail for something special for the little sweet girl. :-) Love, hugs, and kisses. Your forever friends, J
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Name : Barbara
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Email Address : fridge@davesworld.net
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URL :
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Where are you from? : Pontiac, Illinois
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Comments : Reading your page on Jenna takes me way back to l954 and l957. I had 2 daughters with Hurler's. One passed at l3 yrs and the other at l5 yrs. There was no cure then. I am so pleased to know now that so much has been done and continuing. The best of luck t
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Name : Amy Legendre
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Email Address : ahlegendre@yahoo.com
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URL :
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Where are you from? : Homer, LA
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Comments : Just stopping back by. i had contacted you back in the early part of 2000. I have a little girl with Hurler's that had a BMT in 1995. We are almost 6 yrs post-BMT and she is doing well. We have many of the same "complications" that Jenna has such as the h
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Name : Barbara Sutton
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Email Address :
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URL :
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Where are you from? : Australia
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Comments : Dear, Sherri Keith and Jenna,
My love and best wishes to you all especially baby Jenna Marie....
Barbara....
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Name : Nicoletta
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Email Address : 026132255@iol.it
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URL :
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Where are you from? : Italy
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Comments : My baby Micol now has the second BMT because the first is failled.
She has MPS I Hurler.
Take care!
Love
Nicoletta
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Name : Trina Ward
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Email Address : trinaw@one.net.au
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URL : http://www.daria.one.net.au
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Where are you from? : Brisbane, Australia
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Comments : We have now found a match for Daria. We are expecting baby #2 in Early September and the baby is a perfect match. Will let you know more later. Love Trina
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Name : Emily WInn (Cameron's Mom)
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Email Address : esmw72@yahoo.com
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URL : www.oocities.org/esmw72/index.html
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Where are you from? : Anniston, AL
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Comments : What a precious little girl!! I got your address from Pam at Cook Children's... my son is 19 months old and having his BMT there next month. I'm glad to see Jenna's doing so well. Love, another Hurler mom...
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Name : Corey Thompson
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Email Address : chosen_serenity@hotmail.com
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URL :
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Where are you from? : Canada
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Comments : While researching a bio project, I discovered Jenna's page.
I wish to extend the best of luck and happiness to her.Good luck Jenna and Family
Sincerely Corey Thompson
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Name : Kathy Crawford
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Email Address : kmnc777@hotmail.com
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URL :
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Where are you from? : Sulphur Springs, TX
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Comments : My uncle died of MPS I long before I was born and a dear friend in high school also died because of this condition. This was before they did the bone marrow transplants. My uncle was the only unhealthy child out of 13 children that my grandmother had and
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Name : jenelle
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Email Address : mmssccoott@aol.com
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URL :
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Where are you from? : simi valley california
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Comments : my son noah has hurlers syndrome he is 3 yrs old
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Name : Trisha
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Email Address : tvloop1@aol.com
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URL :
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Where are you from? : Wisconsin
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Comments :
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Name : Barbara Sutton
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Email Address : barbara_suttons@hotmail.com
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URL :
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Where are you from? : Australia
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Comments : Dear Sherri,
I have been trying to contact you through email, but they do not seem to be arriving at your address. Can you please let me know of a current addres as I need to ask you about a photo of Jenna that I wish to use in my Hurler assignment,,,
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Name : Joey Kluesener
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Email Address : meoozic816@hotmail.com
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URL :
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Where are you from? : Reynoldsburg, Ohio
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Comments : I examined Jenna Marie for a high school genetics class project. I chose Hurler's disease for it's connection to MPS and the enzyme missing to break down the stored substances.
Your site has been very helpful with photos and explanations for me to lear
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Name : monique
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Email Address : boricua_1313@yahoo.com
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URL :
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Where are you from? : california
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Comments : i think that your page is wonderful and has a lot of meaning. it takes alot of courage to do something like that. i am doing a report on hurler syndrome and learned alot on your page and i just wanted to say thanx 4 shring the stories and pictures! best o
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Name : Tordis Winstrup
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Email Address : Tordis-jone@c2i.net
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URL :
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Where are you from? : Norway
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Comments : I work with a little boy with hurler syndrome, so I find it very interesting to read about other children with this disease. Very nice page.
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Name : carolyn caucci
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Email Address : tweet84675@aol.com
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URL :
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Where are you from? : phila, PA
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Comments :
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Name : Rae Thomas
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Email Address : raethomas
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URL :
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Where are you from? : Port Elizabeth, South Africa
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Comments : You have a beautiful little girl.
All the best for the future
Regards
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Name : Rob and Laura
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Email Address : rlabeth@wt.net
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URL : www.oocities.org/rlabeth
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Where are you from? : Houston
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Comments : Hi there it was good to meet mommy. we got to see pics of you and you look good. please check out our son Sean. He has hurlers also
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Name : mila
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Email Address : ermilaborrego@aol.com
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URL :
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Where are you from? : g.p
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Comments :
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Name : mila
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Email Address : ermilaborrego@aol.com
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URL :
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Where are you from? : g.p
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Comments : Hope that u are having a great summer, Jenna.I can't wait to see you in August!!
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Name : Trina Ward
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Email Address : daria99@bigpond.com
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URL : http://www.users.bigpond.com/daria99
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Where are you from? : Brisbane, Australia
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Comments : Thank you so much for the recent photos of Jenna. I have been absolutely dying to see what she looked like. Jenna - you are a truly beautiful young lady. I just hope our little Daria comes through her transplant in September as well as you have.
Love &
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Name : erin
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Email Address : bellyring2@hotmail.com
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URL :
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Where are you from? : australia
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Comments : i'm doing an assessment oral presentation on hunter's at school and i came across this site. may i just say that Jenna is absolutely gorgeous! she is such a brave little girl and i wish you all the best of luck with any further procedures!
luv erin :)
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Name : Ann Barr
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Email Address : annbarr@hotmail.com
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URL :
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Where are you from? : Tennessee
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Comments : Our God daughter, Caroline Vermillion, from N.C. also has Hurler's Syndrome and is 12 years old. She is the most precious little girl to us and her family of 4 other sisters that ARE producing the enzyme needed. OUr prayers are with you. You are wonderful
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Name : Gonçalo Carneiro
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Email Address : carneiro@itqb.unl.pt
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URL :
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Where are you from? : Lisbon, Portugal
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Comments : I was just looking for information on Hurler's syndrome and all of the sudden i find myself in Jenna's homepage. There's probably only one thing that i can do for you, and that is praying.
As far as i understood, Jenna's operation has taken place three
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