Canavan Children

<< Start < Prev [1] Next > End >>

Photo	About	Info
	Child's Name: Angela Child's Age: 16 years Location: USA	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.
	Child's Name: Ariel Child's Age: 4 years Location: pa	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
	Child's Name: BAlázs Pap Child's Age: 11 years Location: Hungary
	Child's Name: Ben Child's Age: 7 years Location: Norfolk England	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.
	Child's Name: Ben Fletcher Child's Age: 7 years Location: Norfolk, UK	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
	Child's Name: Benjamin Child's Age: 8 years Location: New Hampshire	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.
	Child's Name: Brianna Nicholle Location: Gibsonburg, Ohio	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.
	Child's Name: Brooklyn VanSkoyck Child's Age: 6 years Location: Miamisburg, Ohio	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.
	Child's Name: CALUM Child's Age: 11 years Location: lanarkshire, scotland
	Child's Name: Celeste Child's Age: 10 years Location: Illinois
	Child's Name: Danielle Alter Child's Age: 6 years Location: Bayville, NJ	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.
	Child's Name: Davion Child's Age: 9 years Location: KNOXVILLE,TN	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
	Child's Name: dylan and riley Child's Age: 4 years Location: montreal
	Child's Name: Emil Child's Age: 3 years Location: Norway	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!
	Child's Name: georgea Child's Age: 9 years Location: brasil, florianopolis sc
	Child's Name: Gershon Child's Age: 15 years Location: Jerusalem	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.
	Child's Name: Gershon Child's Age: 15 years Location: Jerusalem
	Child's Name: hiba Child's Age: 3 years Location: new york
	Child's Name: Jacob Child's Age: 0 years Location: Ca.	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.
	Child's Name: Kevin Child's Age: 27 years Location: Netherlands	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.
	Child's Name: kyle Location: iowa
	Child's Name: Lavie Child's Age: 1 years Location: israel	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
	Child's Name: Lilliana Child's Age: 1 years Location: Hortonville, Wisconsin USA	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.
	Child's Name: Nicholas Breedon Child's Age: 11 years Location: Cooper City, Florida	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.
	Child's Name: Paul/HarleeGrace Gaffney Child's Age: 2 years Location: Manchester,nh	My name is Paul im 2 years old and i have a little sister named HarleeGrace she is 9 months 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 again they are both in the 90% tile paul is 37 inches long and harleeGrace is 26 inches paul is in PT/OT/ST 1 time a week when he turns 3 they will up it to 2 times harleeGrace is in PT/OT 1 time a week
	Child's Name: rafael Child's Age: 26 years Location: argentina	hola mellamo rafael tengo 2 años y tengo canavan y necesito hacerme ese tratamiento pero vivo en argentina y quisiera que me contestaran si aqui va a llegar la cura o en que paises swe esta haciendo lo que pasa que yo no entiendo ingles chau
	Child's Name: Rosa Child's Age: 1 years Location: Devon, U.K.
	Child's Name: sarah Child's Age: 7 years Location: daressalaam	sarah is our first child, she was diagnosed with canavans at 4 mths, our little angel is 7years, i feel very blessed to have this special child she has changed our lives, inspite of of all the challenges sarah is eversmiling and brings so much love n joy into our life.
	Child's Name: Sarp Child's Age: 1 years Location: Ankara/Turkey	Sarp is my strong and stubborn little twin boy. He was diagnosed with Canavan when he was 8 months old. His brother Doruk is healthy luckily. He is a micro injection baby. He was hospitalized more than 8 times due to aspiration pnomony but he is still fighting. He is a real fighter since he recently won against H1N1 Virus. He used to have NG from 8 months to 12 months and we decided to have G Tube operation with Nissen Fundo last month when he was 13 months. We believe Nissen Fundo worked and it is our salvation. He is very emotional li'l man and likes his mother very much. He likes to try to touch mother, try to hold his head by himself, and his favorite is to be told "Well done" when he succeeds to do something. Awarness level is increasing day by day. When he gets the right medication he can smile. He knows 3 words, when I tell those words he can repeat after me. He is holding the head for 1-2 minutes. He likes listening stories, exercises especially p-theraphy and he likes being with family members he can not tolerate loniless. He goes to Neurologist once a two months, pediatrist, P-therapy, Visual Therapy if he finds time from being in hospiatal. :( Sarp is a our snow white prince and we believe he never gives up.
	Child's Name: Vincent Warden Child's Age: 6 years Location: Colorado	Vinny is now 6 years old and doing really well. He had gene therapy surgery in October of 2005. Vince attends kindergarten at our local elementary school and I think that is where he would always like to be! Vinny has a fantastic sense of humor and is one of the happiest kids I've ever known. Everyone who meets him is instantly in love.

<< Start < Prev [1] Next > End >>

Main Menu

Latest Updates