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Child's Name: Aarchi
Child's Age: 3 years
Location: India
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At around 6 months Aarchi was diagnosed with Canavans Disease. We also have done her NAA and Gene tests.
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Child's Name: Alexandra Galanis
Child's Age: 21 years
Location: Atlanta, GA
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Ali is almost 22 years old and has Canavan's Disease. She was diagnosed at two years old. She lives at home with her dad and I and our other three children. I am her step-mom and have been for 6 years now. Until recently, Ali attended school and enjoyed being out in the community. The past year has been tough and her health has deteriorated a bit so the teachers now come to our home. Ali used to laugh and smile and interact quite a bit. We've been so blessed to see that kind of joy in her. We don't see it as often now, but when we do it still melts our hearts.
Overall she stays fairly stable. She hasn't been hospitalized in over 10 years. She has a G-J tube, a fundoplication, and a spinal fusion. She was recently diagnosed with autonomic neuropathy. This appears to be a fairly new discovery with Canavan's kids. She also uses an ABI Vest daily and this has been a life saver for her lungs and any mucus build up. We almost never have to suction her now. She's a beautiful girl and we are so lucky to have her. |
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Child's Name: Angela
Child's Age: 17 years
Location: USA
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Angela is 16 and was diagnosed at 5 mos. It has been a long journey with many ups and downs but she is strong willed and enjoying life. She has learned to communicate through eye blinks and uses an eye blink switch with computer programs. This has opened up a whole new world for everyone because we now know her likes, dislikes and her level of understanding, which is very close to her age level. Remember focus on the positives and just take life one day at a time.
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Child's Name: Ariel
Child's Age: 5 years
Location: pa
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4 years old. Gene therapy in 2005 at 4 months old. Brother :Dylan, Sister: Amber Rose died from canavan in 2000 at age 7. Baby sister on the way in August 2010
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Child's Name: BAlázs Pap
Child's Age: 12 years
Location: Hungary
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Child's Name: Ben
Child's Age: 7 years
Location: Norfolk England
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Ben was diagnosed with Canavans at the age of 18months. He has both a brother (Sam) and sister (Harriet) who are younger and unaffected.
Ben loves loud noises and excitment. |
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Child's Name: Ben Fletcher
Child's Age: 7 years
Location: Norfolk, UK
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Ben is our first child and was diagnosed at 18 months. He goes to our local school one morning a week and has a home program the rest of the time. Ben loves music, his sensory room, vibrating toys and has a typical little boy's toilet humour!
Ben has his own website at www.allaboutben.co.uk We are happy to be in touch with other families |
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Child's Name: Benjamin
Child's Age: 8 years
Location: New Hampshire
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Benjamin is eight years old and continues to be a happy little boy engaged with his family and friends. He loves music of all kinds and and has fun playing with his two younger brothers Samuel (6)and Oliver(2). He loves to be out and about with his family doing day trips to Boston or to the beach. Sweet, and ever so brave, Benjamin is the best little guy to snuggle with and we do that as much as possible.
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Child's Name: Brianna Nicholle
Location: Gibsonburg, Ohio
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Brianna is 15 & has had a long journey in her short life. She has been through gene therapy in March of 1998. Has had the G-tube since she was 2 1/2 years old. She recently went through spinal surgery to help straighten her back.
Over all Brianna is a very happy healthy young lady. Full of smiles & onryness. She loves to be played "rough" with and does one blink yes responses & rolls her eyes up for NO. She knows what she likes & through her eyes not afraid to tell you either. These kids may not be able to tell you they love you by words but like Brianna she tells me every day when I walk in the room and her eyes light up. When she smiles as she hears my voice. And how she will cuddle up against me when I sit beside her. She is an absolute joy to me and her big sister Donika. |
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Child's Name: Brooklyn VanSkoyck
Child's Age: 6 years
Location: Miamisburg, Ohio
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Brooklyn is 6 yrs. old and full of fun and spirit. She doesn't take any meds and at this time has no medical issues except to wear glasses. She goes to Kindergarten 3 days a week and has OT and PT several times a week. She loves to sit in her wheelchair or on the couch and play with barbies or littlest pet shop toys. She recently lost her first tooth. Brooklyn has 1 little brother Xander who is 4 and is not affected and does not carry the gene.
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Child's Name: CALUM
Child's Age: 11 years
Location: lanarkshire, scotland
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Child's Name: Celeste
Child's Age: 10 years
Location: Illinois
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Child's Name: Danielle Alter
Child's Age: 6 years
Location: Bayville, NJ
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Danielle is a beautiful 6 Yr old. Danielle recieved the Gene Therapy at Cooper Hospital in NJ. Since then, Danielle attends school, giggles and responds to voices.
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Child's Name: Davion
Child's Age: 9 years
Location: KNOXVILLE,TN
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DAVION LOVES 2 PLAY WITH HIS BROTHER, HE ALSO LOVES TO LISTEN TO HIS MUSIC AND WATCH JIMMY NETROUN...HES JUST A ALL AROUND HAPPY CHILD
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Child's Name: dylan and riley
Child's Age: 4 years
Location: montreal
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Child's Name: Emil
Child's Age: 3 years
Location: Norway
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Hi
Emil is 3 years old now and doing very well. He was diagnosed with Canavan at the age of 3 months. He has an older (5 years) and an younger brother (4 months). Emil love loud noises, music, noises from his brothers and especially "Rorry, the race car" on tv. We are happy to be in touch with other families, especially from Scandinavia. There are only two children diagnosed with Canavan in Norway. I have made a Facebook group named Canavan Disease so please join it! |
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Child's Name: georgea
Child's Age: 9 years
Location: brasil, florianopolis sc
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Child's Name: Gershon
Child's Age: 15 years
Location: Jerusalem
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Gershie is now 15 years old! He attends school full time and when he is at home, he has an aide most days to keep him company. He gets OT, PT, RT and love and attention at school and outside of school he goes for water therapy once a week. He loves taking walks, on a good day still giggles at the silly games we play and though growing old has been difficult, we feel blessed that he is still with us in our home.
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Child's Name: Gershon
Child's Age: 15 years
Location: Jerusalem
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Child's Name: hiba
Child's Age: 3 years
Location: new york
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Child's Name: Jacob
Child's Age: 0 years
Location: Ca.
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Jacob is 7 years old. He's been diagnosed with Mild Mental Retardation. He's had an MRI that shows high NAA levels indicating Canavan's Disease. He is being seen at UCSF and we're still undergoing tests to find out what is going on with him.
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Child's Name: Kevin
Child's Age: 27 years
Location: Netherlands
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Kevin is our oldest son, now he is 27 years old !!! We know he has Canavan since he was 1 year old .We susspected there was something wrong when he was 5 months ,then they began the search.Even before then you could notice things , but the doctors said it was because the delivery whent not so easy.
He has a younger brother, Marvin, he is 18 years old and he is healthy. If he is a carrier we don’t know. In the beginning he was sick very often and whent in and out the hospital.After he was diagnosed they said he would be 5 years at the most. There was no information at all about Canavan, no internet, nothing in the books, just a half page in “Childrens Neurologie “. We are not Jewish, it is a coincidence. We know we gave Kevin two bad genes, but also a strong constitution. We whent on with our lives very soon and decided that we wanted to make the best of it. At 7 he got epilepsy, at 16 he got a g- tube, We had al kinds of things ajusted at home and around the place , this makes it easyer to take care of him .He stil goes everywhere with us as much as he can and enjoys it a lot .The last years his scoliosis has gotten worse , so he must lie down when he gets tired. Until now Kevin is always cheerful and still in contact with everyone around him.We know for sure that he is a very happy young man. He enjoys it when people give him attention, with his reaction he invites them to go on with it . It is evedent now that it was important to stimulate him as much as possible, that keeps him alert, lively and cheerful. He has PT 2 times a week and goes “huif-bed-riding “once every week. He is at home 24/7 and gets all kinds of activity’s there. Kevin had no gene-therapy. Kevin has a brother : Marvin who is 23 years old and he is healthy. I also want to help anywhere I can to give information to everyone who needs it . Greetings Sylvia Driessen and Leo Driessen Please feel free to contact me user the 'Email User' tab on my profile. |
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Child's Name: kyle
Location: iowa
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Child's Name: Lavi
Child's Age: 2 years
Location: Israel
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Lavi, our beautiful, 18 months old baby was diagnosed with Canavan disease about a year ago. As soon as he was diagnosed, we started searching everywhere for special treatments and found Dr. Paula Leone from New Jersey's Cell & Gene Therapy Center (CGTC). We raised donations and started treatment. Lavi (who was blind, deaf and restless at this point) started to see, hear and react to the world.
Now Lavi needs to undergo a brain surgery that has never been done before in order to survive. In order to perform the surgery further research must be accomplished at the cost of 1.500.000 USD. Due to the economical crisis in the States, three major grants have stopped their funding of the research. Without completing the research, the NIH will not approve the surgery. Therefore, we kindly ask for your help supporting the research by donating and by sharing our websites http://www.give2lavi.org/ , http://ow.ly/HLyf and Facebook page http://www.facebook.com/Give2Lavi with your friends and family. Thank you for taking part in this effort, may you have an answer to our prayers. Yulia & Gili Ben Moshe Toll free no. (from U.S.A) 1-866-944-LAVI (5284) Israeli mobile no. +972-54-2132136/7 email: yuliapld@zahav.net.il |
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Child's Name: Lilliana
Child's Age: 2 years
Location: Hortonville, Wisconsin USA
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Lilliana was diagnosed at 6 months old and is doing well. She has a new little sister, Analiese, who is not affected. She loves music, lights, snuggling, and funny noises.
She receives PT, OT, SP and every other week has a home nurse, early childhood teacher and a dietitian. Lilliana is currently involved with Dr. Leone taking several medications and vitamin supplements. Lilliana is a happy, smiley little girl they people can't help but love. When she laughs you can help but laugh with her. She brings joy to everyone she meets. |
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Child's Name: melis
Child's Age: 1 years
Location: antalya
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Child's Name: Nicholas Breedon
Child's Age: 12 years
Location: Cooper City, Florida
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Nicholas was diagnosed at 14 weeks of age. He is now 11 yrs old and doing very well. At the age of 5 he underwent gene therapy. Nicholas like most of the children loves silly sounds and has the greatest laugh to prove it.
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Child's Name: Paul/HarleeGrace Gaffney
Child's Age: 2 years
Location: Manchester,nh
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My name is Paul im 2 years old and i have a little sister named HarleeGrace she is 1yr old and both of us been dignosed at birth with canavan i love to talk to my sister and mom and dad we love funny sound and bright flashy light our favorite place to go is Disney world i love mickey mouse and the wonder pets my sister like Minnie mouse. I was born on Aug 28,2007 and my sister was born on June 9,2009. When paul was 18months he got a g/j tube he was just not getting enough intake in formula and his weight decreased rapidly but now his weight for his age is in the 50%tile both harleegrace and paul are very tall for there age they are both in the 90% tile paul is 38 inches long and harleeGrace is 30 inches paul is in PT/OT/ST 1 time a week harleeGrace is in PT/OT 1 time a week
Paul will be attending preschool sept2010 2 days a week then transition to 4 days a week |
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Child's Name: Piotr Chomicz
Child's Age: 13 years
Location: PL walbrzych
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Nazywam Się Piotr. Urodziłem Się W Polsce W 1997 Roku. Zostałem zdiagnozowany Canavan choroba - mając 6 miesięcy. Kocham muzykę i taniec, wesołym chłopcem JESTEM. Uczę Się W Domu. Bardzo lubię kontakt z innymi dziećmi. Mam wspaniałą i kochającą rodzinę Mnie. Mam młodszego Brata Grzegorza. Grześ urodził Się W 2007 Roku i jest zdrowym chłopcem.
Zapraszam na strone Swoją www.chomiczpiotrek.ovh.org Piortuś z rodzicami |
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Child's Name: Rachel
Child's Age: 11 years
Location: Worcester, MA
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Every day Rachel reminds me of what a miracle she is. She is a happy girl with a wonderful sense of humor.
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Copyright © 2010 Canavan Research Foundation.
