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Name: City: wellington new zealand Sent: 06/04 08:35 my family is not on the internet the only chance i have to get on the net is when i am a school my mum and i try to find out as much as we can but it is hard because we cant seem to find anyone in new zealand with it so i decide i would try and talk to you about it to see how much information you have anout it. the doctors have known that katie has trichothiodystrophy for over seven years before they told my mum since they never diganosed here with any one syndrome we just calle dit katie syndrome intill doctor coffin laury came to new zealand and took some of katies here and he found out waht she had. katie has very frizzy hair and it breaks very easily she has never lost all of it but when some of her hair comes out its quite alot of it that does if you ever feel like contacting my mother who is called irene you can try my email adress we hope to get the internet very soon so you can have direct contact with her thank you and bye Name: Homepage: http://www.caringbridge.org/me/dylanhartung City: New York (Home is Skye, Vic in Australia) Sent: 20/03 01:10 Hi Sammyjoe We signed your caring bridge site yesterday, your an amazing kid. We pray you can come to the USA again very soon, don't give up. Name: City: LAGOS Sent: 18/03 21:27 GUYS I DEY HEREOOOOOOOOOOOOOOOOOOOOO Name: City: nigeria Sent: 18/03 21:23 Sammy Joe I wish you all the best. I admire both you and your Mother Name: City: nigeria Sent: 18/03 21:23 Sammy Joe I wish you all the best. I admire both you and your Mother Name: Homepage: http://www.bridgeofdreams.org City: Virginia USA Sent: 10/03 16:49 Sammy Joe is in my prayers what a sweet little guy he is XOXOXO Love and prayers. Name: Homepage: http://www.heartwarmers4u.com/members/?lisaw City: USA Sent: 26/02 02:59 Your beautiful family is blessed to have Sammy-Joe in your life. Continue to enjoy every moment of life. Embrace every second. My thoughts and prayers go out to Sammy-Joe and your family. May God bless you all. ((((HUGS)))) Lisa, Angel Chyanne's Nana Name: City: Glasgow, Scotland Sent: 13/02 20:21 Hi, I came to the site through the Raise Awareness board. I had never heard of this disease before and hope to learn more about it. I look forward to seeing updates as well for your beautiful son. Godd bless you. Name: City: London Sent: 13/02 05:48 Sammy Joe I wish you all the best. I admire both you and your Mother. I hope you get back to the States soon. My thought are with you. Smile and live life to your fullest!! Name: Homepage: http://www.bridgeofdreams.org City: Virginia USA Sent: 03/02 20:48 Sammy Joe is in my prayers, what a brave young man he is. XOXOXO Love and prayers, Name: City: Columbia, PA Sent: 03/02 13:10 God Bless you all, my heart and prayers go out to you. You have so much courage where it would be so easy to have none. Sammy-Joe, I admire you and I wish you all the blessings you deserve. Name: City: Arcadia CA Sent: 02/02 17:46 Thinking of you...God Bless Private message:  Click here to viewName: Homepage: http://www3.caringbridge.org/tx/lily Sent: 23/12 12:34 Sammy-Joe is such a wonderful, special little boy! He is very lucky to have such a caring and concerned mother. Even though we live so far away from each other and have never met in person, you are a great inspiration to me. Thanks for all your support and concern! Amy, Natalie and Lily's mom www3.caringbridge.org/tx/lily Name: Homepage: http://www2.caringbridge.org/ca/collinpresley City: Long Beach Sent: 18/12 15:36 Sweet Sammy-Joe and Maria~ Your website is so beatiful. I am so grateful to you Maria for your friendship and support. I feel so lucky to have come across the support group. You are doing amazing things to bring attention to TTD. You truly are an unsung hero. I look foward to the day that we meet and I can give Sammy-Joe a BIG hug. Your family is in my prayers. Hugs, Julie (Collin and Regan's mom) Name: Homepage: http://www.optusnet.com.au City: Craigieburn Sent: 12/12 10:27 Hi there I finally had time to read the info about Sammyjoe and anything I can do for you please just call me. If I can help I will if I cant then I will find someone who can help. Please let me know if the is anything we can do to help. Name: City: Brisbane Sent: 24/11 22:54 Thank you for sharing this time in your life and making people like me appreciate what I have. I would like to say to all the family and friends, you will have a place in my heart, As my children grow I will teach them about this and many other disorders/diseases so they have a better understanding of not only the world around us but the people that a less fortunate than them, and help them understand life is to short to be taken for granted. Name: City: england basildon essex Sent: 24/11 03:43 Hi my name is Mandy and both of my sons have the same condition as your son , as strange as this may seem you are the only person i have found who has a child with the same condition . My eldest son was found to have this when he was about two. He was rather poorly while i was pregnant with him and was very poorly when his was first born, he had dry skin that flaked off weighed 4lb 14oz and had know hair .Doctors thought that it was because he was born 4 weeks early and he come home when he was about 3 months old.he was then doing fine until he was one and a half when he caught an infection on the lining of the brain he was in hospital for some time he had many seizures and stopped breathing this is when he was moved to great ormond street hospital. When he continued to have seizures great ormond street diagnosed him with Trichothiodystrophy . There is not much this hospital can tell us about this condition as they do not know much about it. My son has white brittle hair ,dry skin,epilepsy, and learning difficulties, he is 9 years old. My other son has white brittle hair,dry skin , brittle nails and what seems to be some learning difficulties ,also both have no eyebrows . my daughter on the other hand does not have this condition and is perfectely healthy. Your son seems to be a right fighter and must be a treasure to you as are all of my children to me. i hope to hear from you soon as it will be nice for me and my husband to have somebody to talk to about this. i wish you all the very best . mandy Private message: Click here to viewSent: 19/11 08:13 > Hi Sammy Joe, > > I read mums story in the notice board magazine, and I must say how happy I > was to hear of your fantastic achievment in winning your first gold medal, > Well Done. > > Your very lucky to have the love and support of your obvioulsy wonderful > family. > > You keep running Sammy Joe and never loose sight of your dreams, your a > true inspiration, you have definetley moved me. > > > Best wihes to you and your family always, > > Sandra > Sandra Licciardo > Aids and Equipment Program > Ph; 9345 6894 > Hi Sammy Joe, > > I read mums story in the notice board magazine, and I must say how happy I > was to hear of your fantastic achievment in winning your first gold medal, > Well Done. > > Your very lucky to have the love and support of your obvioulsy wonderful > family. > > You keep running Sammy Joe and never loose sight of your dreams, your a > true inspiration, you have definetley moved me. > > > Best wihes to you and your family always, > > Sandra > Sandra Licciardo > Aids and Equipment Program > Ph; 9345 6894 Name: Sandra City: Sandra Licciardo Sent: 14/11 15:50 Hi Sammy Joe, I read mums story in the notice board magazine, and I must say how happy I was to hear of your fantastic achievment in winning your first gold medal, Well Done. Your very lucky to have the love and support of your obvioulsy wonderful family. You keep running Sammy Joe and never loose sight of your dreams, your a true inspiration, you have definetley moved me. Best wihes to you and your family always, Sandra Sandra Licciardo Aids and Equipment Program Name: Homepage: http://stores.ebay.com/raworigins_W0QQsspagenameZMEQ3aFQ3aSTQQtZkm City: Ocean Springs, MS (USA) Sent: 29/10 02:07 God sent a special little angel, Sammy-Joe, to a mother who was just right. Thanks for sharing your love to the world! Name: City: Mobile, AL Sent: 27/10 04:52 Sammy-Joe all the way from across the world you have touched my "heart". I just want you to know that you are in our thoughts and prayers EVERY DAY! MAY GOD BLESS YOU! Name: City: Sydney Sent: 18/10 10:58 Hope you are still going well and smiling. What a wonderful boy and you are a fantastic mother. Name: Sent: 25/09 15:58 Hi Maria, Joe(Mosca) & Family, This is Ellena you remember Tony Simola that worked with you. I have just discovered your website and often wonder how your beautiful son is going. He has grown into a lovely young man. I hope that things are going well for you and all the family. I would love to hear back from you if you have a chance to respond. I often think back to those fun times that we all had together when we were younger. Take care and keep on being strong as you always have been. Love Ellena Simolaxxxxxxxxxx Number of entries: 73 [ Back to Sammy-Joe's Homepage ] Create a FREE guestbook! Alxhost Web Hosting - $4.95/month! Remove these links Click for more info! |