Guest guest Posted October 20, 2003 Report Share Posted October 20, 2003 Krista, Thank you so much for sharing your story! It gives me a much better idea about the things I can expect from my own son, who is 8 years old now. I'm so happy for you that you're doing well now and finally love yourself just as you are. Rosie (mom to Neal, 8, CHARGE, and -Marie, 3) P.S. Neal is an amazing photographer at just 8 years old. I think because he sees what beauty really is. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2003 Report Share Posted October 20, 2003 Hi; I was born on December, 3rd 1978 at St. Joesph Hospital in Hamilton, Ontario Canada. Born two months Premature I weighted 3 lbs 12 ozs and was very sick. I have a very rare syndrome called C.H.A.R.G.E. Syndrome, the doctors held little hope for my survival, with two holes in my heart, cranial nerve anomalities, facial paralisis, the inability to swallow on my own, blind in the left eye, deaf in both ears, gastroesophageal reflex, aspiration pneumonia, the first four vertabrates in my neck were missing which gave me a short neck and a lifetime of pain due to lack of movement and the inability to use the neck and shoulders like everyone else. 30 - 40 % of children with C.H.A.R.G.E. Syndrome will only make it to 5 years old, as many as 20% - 25% may not survive beyond 2 years of age despite their best efforts. I am now 24 years old and if it wasn't for the doctors, nurses, and specialists at St. Joesph Hospital, Mc Master Hospital, and Sick Children's Hospital I wouldn't be here today. If it wasn't for the love of my family and the kind of medical care I needed and received from my mother who is also a nurse, I wouldn't have had the will to survive. I started walking at 3 years old, got my hearing aids at 4, and started talking at 5. From the moment I was born the only way I received nutrition was to be fed through a G - Tube, today they call it a button, for the first two years I was fed through the mouth before the doctors put one in my stomach, and until I was 13 years old I was fed through a G - Tube in my stomach. For the first 5 years of my life every physical challenge that was thrown my way, I succeeded at, no matter what problem I came across I over came it. At 5 years old I began attending Queensdale Public School for the Hearing Impaired. I went through 5 years of a fun education that I loved, I grew up to be a happy, energetic, pratically normal 10 year old. Then I graduated from Queensdale and intergrated into Blessed Kateri Tekawitha School for the last three grades before going to High School. When I began grade six life changed for me, just because I was different from my classmates and new to the School they never took the effort to be my friend. Throughout the last seven years of my education I was an outsider, never was accepted for who I am, they neglected to include me and to try to be a friend. I craved for acceptence, approval, and to be appreciated by my classmates and teachers. Only three students and ten teachers from both Blessed Kateri Tekawitha and St. De Brebeauf ever acknowledged my existence. From the time I was ten 1/2 years old until I was 19 years old I hated myself, the way I looked, the way I sounded, the students intensified the fact that I was different and made me feel worthless. At 19 years old I graduated from St. De Brebeauf High School, my grandfather died from Cancer, and for the first time in years I finally loved who I am, what I sounded like, comfortable in my own skin. The year was 1998. Now at 24 years old I am attending Mohawk College to get my Certificate in Photography so that one day I can become a professional photographer. Throughout my life I taught myself how to swallow and at 13 years old I got rid of my G - Tube, an accomplishment not a lot of other kids have succeeded at who are unable to swallow themselves. At the end of March 2003, I lost my hearing and was hysterical that it would never return. I went to the doctor's and he put me on strong antibiotics to clear up any infections I might have, and for the next six weeks I had no hearing. At the beginning of May 2003 my hearing returned. We found out that I had an infection in the Cochlea, and that damaged my hearing to non - existence. I hope you liked the Story of My Life. Sincerely yours; Krista Bach. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2003 Report Share Posted October 20, 2003 Krista, I enjoyed reading your story, thank you so much for sharing! It really does give hope to the many families and children out there that are in question about what the future will be like for them. I wish you the best in all your journeys.... Maureen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2003 Report Share Posted October 20, 2003 Krista, you are an inspiration to us all. Congratulations on all of your accomplishments. You have overcome so much. DeAnn, Mom to Austin 8, 4, and CHARgEr Whitney 3 months old Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2003 Report Share Posted October 20, 2003 Welcome. We look forward to hearing more from you. Your stories will help so many, the good times and the bad. It is great that you were able to learn to eat and it is sad that school in a supposedly inclusive setting was so bad for you. It sounds like you are one awesome young lady. Kim Mom to Dylan CHaRGE, Kayla 12, Tyler 15 (who takes the test for his driver's permit today) > Hi; > I was born on December, 3rd 1978 at St. Joesph Hospital in Hamilton, > Ontario Canada. Born two months Premature I weighted 3 lbs 12 ozs > and was very sick. I have a very rare syndrome called C.H.A.R.G.E. > Syndrome, the doctors held little hope for my survival, with two > holes in my heart, cranial nerve anomalities, facial paralisis, the > inability to swallow on my own, blind in the left eye, deaf in both > ears, gastroesophageal reflex, aspiration pneumonia, the first four > vertabrates in my neck were missing which gave me a short neck and a > lifetime of pain due to lack of movement and the inability to use > the neck and shoulders like everyone else. > 30 - 40 % of children with C.H.A.R.G.E. Syndrome will only make it > to 5 years old, as many as 20% - 25% may not survive beyond 2 years > of age despite their best efforts. I am now 24 years old and if it > wasn't for the doctors, nurses, and specialists at St. Joesph > Hospital, Mc Master Hospital, and Sick Children's Hospital I > wouldn't be here today. If it wasn't for the love of my family and > the kind of medical care I needed and received from my mother who is > also a nurse, I wouldn't have had the will to survive. > I started walking at 3 years old, got my hearing aids at 4, and > started talking at 5. From the moment I was born the only way I > received nutrition was to be fed through a G - Tube, today they call > it a button, for the first two years I was fed through the mouth > before the doctors put one in my stomach, and until I was 13 years > old I was fed through a G - Tube in my stomach. For the first 5 > years of my life every physical challenge that was thrown my way, I > succeeded at, no matter what problem I came across I over came it. > At 5 years old I began attending Queensdale Public School for the > Hearing Impaired. I went through 5 years of a fun education that I > loved, I grew up to be a happy, energetic, pratically normal 10 year > old. > Then I graduated from Queensdale and intergrated into Blessed Kateri > Tekawitha School for the last three grades before going to High > School. > When I began grade six life changed for me, just because I was > different from my classmates and new to the School they never took > the effort to be my friend. Throughout the last seven years of my > education I was an outsider, never was accepted for who I am, they > neglected to include me and to try to be a friend. > I craved for acceptence, approval, and to be appreciated by my > classmates and teachers. Only three students and ten teachers from > both Blessed Kateri Tekawitha and St. De Brebeauf ever > acknowledged my existence. From the time I was ten 1/2 years old > until I was 19 years old I hated myself, the way I looked, the way I > sounded, the students intensified the fact that I was different and > made me feel worthless. > At 19 years old I graduated from St. De Brebeauf High School, > my grandfather died from Cancer, and for the first time in years I > finally loved who I am, what I sounded like, comfortable in my own > skin. The year was 1998. > Now at 24 years old I am attending Mohawk College to get my > Certificate in Photography so that one day I can become a > professional photographer. Throughout my life I taught myself how to > swallow and at 13 years old I got rid of my G - Tube, an > accomplishment not a lot of other kids have succeeded at who are > unable to swallow themselves. > At the end of March 2003, I lost my hearing and was hysterical that > it would never return. I went to the doctor's and he put me on > strong antibiotics to clear up any infections I might have, and for > the next six weeks I had no hearing. At the beginning of May 2003 my > hearing returned. We found out that I had an infection in the > Cochlea, and that damaged my hearing to non - existence. > > I hope you liked the Story of My Life. > > Sincerely yours; Krista Bach. > > > > > Membership of this email support groups does not constitute membership in the > CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. > Information will be available at our website > www.chargesyndrome.org or by calling 1-. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2003 Report Share Posted October 20, 2003 Krista- Oh my -- what a fabulous suprise to find your story this morning!! My daughter, Aubrie, is 5 years old and has CHARGE. We've been involved with the listserve and the Foundation since her birth and have attended each of the conferences. But this year has been different because we met at the conference some adults with CHARGE. It's made a huge impact on me to be able to see with my own eyes what the possibilities are for my daughter. I have great dreams for her, but a part of me has been afraid to really believe they can come true... until I met Kay and Pat at the conference. Your story is more proof for me of all that my daughter can become. It's challenging to have a child who is faced with things beyond my understanding. I don't know what it's like to live with the issues she's had to deal with so far and I can't even imagine the stuff she'll have to face as she grows up. Being able to see life through the eyes of someone else living with CHARGE is such a wonderful gift ... so helpful to us parents trying to help our children navigate this journey. I look forward to getting to know you more over the years. Michele W mom to Aubrie (5 yrs) CHaRgE and (12 yrs) I Have CHARGE Syndrome. Hi; I was born on December, 3rd 1978 at St. Joesph Hospital in Hamilton, Ontario Canada. Born two months Premature I weighted 3 lbs 12 ozs and was very sick. I have a very rare syndrome called C.H.A.R.G.E. Syndrome, the doctors held little hope for my survival, with two holes in my heart, cranial nerve anomalities, facial paralisis, the inability to swallow on my own, blind in the left eye, deaf in both ears, gastroesophageal reflex, aspiration pneumonia, the first four vertabrates in my neck were missing which gave me a short neck and a lifetime of pain due to lack of movement and the inability to use the neck and shoulders like everyone else. 30 - 40 % of children with C.H.A.R.G.E. Syndrome will only make it to 5 years old, as many as 20% - 25% may not survive beyond 2 years of age despite their best efforts. I am now 24 years old and if it wasn't for the doctors, nurses, and specialists at St. Joesph Hospital, Mc Master Hospital, and Sick Children's Hospital I wouldn't be here today. If it wasn't for the love of my family and the kind of medical care I needed and received from my mother who is also a nurse, I wouldn't have had the will to survive. I started walking at 3 years old, got my hearing aids at 4, and started talking at 5. From the moment I was born the only way I received nutrition was to be fed through a G - Tube, today they call it a button, for the first two years I was fed through the mouth before the doctors put one in my stomach, and until I was 13 years old I was fed through a G - Tube in my stomach. For the first 5 years of my life every physical challenge that was thrown my way, I succeeded at, no matter what problem I came across I over came it. At 5 years old I began attending Queensdale Public School for the Hearing Impaired. I went through 5 years of a fun education that I loved, I grew up to be a happy, energetic, pratically normal 10 year old. Then I graduated from Queensdale and intergrated into Blessed Kateri Tekawitha School for the last three grades before going to High School. When I began grade six life changed for me, just because I was different from my classmates and new to the School they never took the effort to be my friend. Throughout the last seven years of my education I was an outsider, never was accepted for who I am, they neglected to include me and to try to be a friend. I craved for acceptence, approval, and to be appreciated by my classmates and teachers. Only three students and ten teachers from both Blessed Kateri Tekawitha and St. De Brebeauf ever acknowledged my existence. From the time I was ten 1/2 years old until I was 19 years old I hated myself, the way I looked, the way I sounded, the students intensified the fact that I was different and made me feel worthless. At 19 years old I graduated from St. De Brebeauf High School, my grandfather died from Cancer, and for the first time in years I finally loved who I am, what I sounded like, comfortable in my own skin. The year was 1998. Now at 24 years old I am attending Mohawk College to get my Certificate in Photography so that one day I can become a professional photographer. Throughout my life I taught myself how to swallow and at 13 years old I got rid of my G - Tube, an accomplishment not a lot of other kids have succeeded at who are unable to swallow themselves. At the end of March 2003, I lost my hearing and was hysterical that it would never return. I went to the doctor's and he put me on strong antibiotics to clear up any infections I might have, and for the next six weeks I had no hearing. At the beginning of May 2003 my hearing returned. We found out that I had an infection in the Cochlea, and that damaged my hearing to non - existence. I hope you liked the Story of My Life. Sincerely yours; Krista Bach. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2003 Report Share Posted October 20, 2003 Krista, Welcome from a fellow Canadian! What a great surprise to come home from work and find your lovely story waiting for me. I live in Saint , New Brunswick and my daughter Kennedy, who is five, has CHARGE syndrome. It has definitely been a major life changing experience for me (definitely enlightening) and one of the best things about having been brought into this world is meeting all the wonderful people I've met. One of my wishes for Kennedy is that she teach herself to swallow and get rid of her tube, I truly believe she will when she WANTS to as she is a very determined little girl who has done so many other things I didn't dream possible. Thank you so much for sharing your story, I hope you continue to post, it was so great to hear from yet another adult living with CHARGE. I have a friend that went to Mohawk College, what a coincidence. I'm thinking that you are kind of far out from Toronto, but I will be coming alone with Kennedy to Toronto on December 7-9 to go to Sick Kid's Hospital, if you want to meet, I'd love it! Hope to hear from you soon, Weir Mom to Kennedy, 5 yr old CHARGEr, 14, 12 and wife to Graeme New Brunswick, Canada Visit our family web site: http://personal.nbnet.nb.ca/gweir CHARGE Syndrome Canada: http://www.chargesyndrome.ca I Have CHARGE Syndrome. Hi; I was born on December, 3rd 1978 at St. Joesph Hospital in Hamilton, Ontario Canada. Born two months Premature I weighted 3 lbs 12 ozs and was very sick. I have a very rare syndrome called C.H.A.R.G.E. Syndrome, the doctors held little hope for my survival, with two holes in my heart, cranial nerve anomalities, facial paralisis, the inability to swallow on my own, blind in the left eye, deaf in both ears, gastroesophageal reflex, aspiration pneumonia, the first four vertabrates in my neck were missing which gave me a short neck and a lifetime of pain due to lack of movement and the inability to use the neck and shoulders like everyone else. 30 - 40 % of children with C.H.A.R.G.E. Syndrome will only make it to 5 years old, as many as 20% - 25% may not survive beyond 2 years of age despite their best efforts. I am now 24 years old and if it wasn't for the doctors, nurses, and specialists at St. Joesph Hospital, Mc Master Hospital, and Sick Children's Hospital I wouldn't be here today. If it wasn't for the love of my family and the kind of medical care I needed and received from my mother who is also a nurse, I wouldn't have had the will to survive. I started walking at 3 years old, got my hearing aids at 4, and started talking at 5. From the moment I was born the only way I received nutrition was to be fed through a G - Tube, today they call it a button, for the first two years I was fed through the mouth before the doctors put one in my stomach, and until I was 13 years old I was fed through a G - Tube in my stomach. For the first 5 years of my life every physical challenge that was thrown my way, I succeeded at, no matter what problem I came across I over came it. At 5 years old I began attending Queensdale Public School for the Hearing Impaired. I went through 5 years of a fun education that I loved, I grew up to be a happy, energetic, pratically normal 10 year old. Then I graduated from Queensdale and intergrated into Blessed Kateri Tekawitha School for the last three grades before going to High School. When I began grade six life changed for me, just because I was different from my classmates and new to the School they never took the effort to be my friend. Throughout the last seven years of my education I was an outsider, never was accepted for who I am, they neglected to include me and to try to be a friend. I craved for acceptence, approval, and to be appreciated by my classmates and teachers. Only three students and ten teachers from both Blessed Kateri Tekawitha and St. De Brebeauf ever acknowledged my existence. From the time I was ten 1/2 years old until I was 19 years old I hated myself, the way I looked, the way I sounded, the students intensified the fact that I was different and made me feel worthless. At 19 years old I graduated from St. De Brebeauf High School, my grandfather died from Cancer, and for the first time in years I finally loved who I am, what I sounded like, comfortable in my own skin. The year was 1998. Now at 24 years old I am attending Mohawk College to get my Certificate in Photography so that one day I can become a professional photographer. Throughout my life I taught myself how to swallow and at 13 years old I got rid of my G - Tube, an accomplishment not a lot of other kids have succeeded at who are unable to swallow themselves. At the end of March 2003, I lost my hearing and was hysterical that it would never return. I went to the doctor's and he put me on strong antibiotics to clear up any infections I might have, and for the next six weeks I had no hearing. At the beginning of May 2003 my hearing returned. We found out that I had an infection in the Cochlea, and that damaged my hearing to non - existence. I hope you liked the Story of My Life. Sincerely yours; Krista Bach. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2003 Report Share Posted October 20, 2003 Kris: I just join the group and your history is the first I have read, right now Im kind of confused, we just got our first baby last 9th and she is possibly having the charge syndrome, Im not sure to which extent but we will figure it out, thank you for sharing this story, is a greate message to encourage people to be better human beings and over come any difficulty that may ocurr. receive a warm huge from me > Hi; > I was born on December, 3rd 1978 at St. Joesph Hospital in Hamilton, > Ontario Canada. Born two months Premature I weighted 3 lbs 12 ozs > and was very sick. I have a very rare syndrome called C.H.A.R.G.E. > Syndrome, the doctors held little hope for my survival, with two > holes in my heart, cranial nerve anomalities, facial paralisis, the > inability to swallow on my own, blind in the left eye, deaf in both > ears, gastroesophageal reflex, aspiration pneumonia, the first four > vertabrates in my neck were missing which gave me a short neck and a > lifetime of pain due to lack of movement and the inability to use > the neck and shoulders like everyone else. > 30 - 40 % of children with C.H.A.R.G.E. Syndrome will only make it > to 5 years old, as many as 20% - 25% may not survive beyond 2 years > of age despite their best efforts. I am now 24 years old and if it > wasn't for the doctors, nurses, and specialists at St. Joesph > Hospital, Mc Master Hospital, and Sick Children's Hospital I > wouldn't be here today. If it wasn't for the love of my family and > the kind of medical care I needed and received from my mother who is > also a nurse, I wouldn't have had the will to survive. > I started walking at 3 years old, got my hearing aids at 4, and > started talking at 5. From the moment I was born the only way I > received nutrition was to be fed through a G - Tube, today they call > it a button, for the first two years I was fed through the mouth > before the doctors put one in my stomach, and until I was 13 years > old I was fed through a G - Tube in my stomach. For the first 5 > years of my life every physical challenge that was thrown my way, I > succeeded at, no matter what problem I came across I over came it. > At 5 years old I began attending Queensdale Public School for the > Hearing Impaired. I went through 5 years of a fun education that I > loved, I grew up to be a happy, energetic, pratically normal 10 year > old. > Then I graduated from Queensdale and intergrated into Blessed Kateri > Tekawitha School for the last three grades before going to High > School. > When I began grade six life changed for me, just because I was > different from my classmates and new to the School they never took > the effort to be my friend. Throughout the last seven years of my > education I was an outsider, never was accepted for who I am, they > neglected to include me and to try to be a friend. > I craved for acceptence, approval, and to be appreciated by my > classmates and teachers. Only three students and ten teachers from > both Blessed Kateri Tekawitha and St. De Brebeauf ever > acknowledged my existence. From the time I was ten 1/2 years old > until I was 19 years old I hated myself, the way I looked, the way I > sounded, the students intensified the fact that I was different and > made me feel worthless. > At 19 years old I graduated from St. De Brebeauf High School, > my grandfather died from Cancer, and for the first time in years I > finally loved who I am, what I sounded like, comfortable in my own > skin. The year was 1998. > Now at 24 years old I am attending Mohawk College to get my > Certificate in Photography so that one day I can become a > professional photographer. Throughout my life I taught myself how to > swallow and at 13 years old I got rid of my G - Tube, an > accomplishment not a lot of other kids have succeeded at who are > unable to swallow themselves. > At the end of March 2003, I lost my hearing and was hysterical that > it would never return. I went to the doctor's and he put me on > strong antibiotics to clear up any infections I might have, and for > the next six weeks I had no hearing. At the beginning of May 2003 my > hearing returned. We found out that I had an infection in the > Cochlea, and that damaged my hearing to non - existence. > > I hope you liked the Story of My Life. > > Sincerely yours; Krista Bach. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2003 Report Share Posted October 20, 2003 Krista, Thank you for sharing your story. You are truly an amazing person. I am the mom of a 6 year old boy named with CHARGE who continues to amaze me by the persistence he has to achieve. I have a question for you. How did you teach yourself to swallow? Did anyone help you? How did you figure it out? What technique did you use to teach yourself, like how did you move the food through your mouth and learn to control your swallow? This is my son's biggest problem. He is getting better, and can now tell me if he aspirates or not but I wish I knew how to help him better. I just listen to all his therapists. He tells me when he gets bigger he will eat. Does he know something I don't? Debbie Matasker Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2003 Report Share Posted October 21, 2003 Cherios on a string, put it on his tongue and tell him to use his tongue to move the Cherio from the front of his mouth to the back and back to the front using the roof of his mouth. If his mouth is too small for a cherio, use a smaller food item that you can easily tie a string to - thread works best. This way if the Cherio goes you can yank it out with no problems. I was determined to swallow, and had a therapist help me out. It does take time but do you know the exercises that his therapist uses? And if there are any exercises he should be doing at home? Mom worked with me, and I worked as well in front of a mirror. Also I started off with soft things, and things that could melt in my mouth. Bananas, ice cream, baby food Just to name a few. Sincerely yours; Krista Bach. > >Reply-To: CHARGE >To: CHARGE >Subject: RE: Re: I Have CHARGE Syndrome. >Date: Mon, 20 Oct 2003 17:33:11 -0400 > >Krista, > >Thank you for sharing your story. You are truly an amazing person. I am >the mom of a 6 year old boy named with CHARGE who continues to >amaze >me by the persistence he has to achieve. > >I have a question for you. How did you teach yourself to swallow? Did >anyone help you? How did you figure it out? What technique did you use to >teach yourself, like how did you move the food through your mouth and learn >to control your swallow? This is my son's biggest problem. He is getting >better, and can now tell me if he aspirates or not but I wish I knew how to >help him better. I just listen to all his therapists. He tells me when he >gets bigger he will eat. Does he know something I don't? > >Debbie Matasker > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2003 Report Share Posted October 21, 2003 Hey Krista, My name is Chip Dixon, 24 yrs. old CHARGEr from Los Angeles Ca. Wow! Your story sound amazing and cool! I had go through a lot of problems and succeed at some stuff through out my life too ya know. I'm hard of hearing, near sighted, I'm short and have weight gaining problems (around 5 ft or so tall, and weigh around 81-82 lbs), I have swallow problems, but it is only minor, smile! I have 2 CHARGE friends who would love to read your story, and we're all smart and are all hard of hearing. My young CHARGE friend is mostly g-tube fed, he isn't ready to swallow any foods yet. His name is and he is in Simi Valley Ca. And I got another CHARGE friend (well, 2 more, but I'm not gonna list the whole bunch of friends here, just these 2 guys), his name is , he's 23 yrs old and he's in Wa DC. Anyway....enough about my friends, lol! I graduated from Mt San College this past late Spring of '03 (May), with a Pet Science Certificate. I have been going there for 5 yrs now, wo w! Now, I'm currently volunteering at the animal shelter here in Pasadena, and go to La Puente Adult Ed Dog Grooming School, cool huh? You might say I got a busy life with school, volunteering, and friends, right? I wanna be a pet groomer/animal caretaker, not a vet tech/assistant. Cuz, I'm not too good in math and chemistry, and they require for anyone to take it to be a vet tech, sigh! Oh Well, at least I'm doing pretty school at my training school right now. Oh Yeah, I forgot to metion to you why I'm short and weight problem, cuz I have Growth Hormone Defiency (same thing with my little buddy, !). I used to take growth hormone shots for 5-6 yrs. then, earlier this late spring, I started taking a new medication, androderm patch, that suppose to help me gain some weight, masculine stuff on my body, bigger appetiite, and so on. Oh Well, my email address is: ecdixon91010@... Please keep in touch, take care. Peace, smile! Ol' Chipper -- --------- Original Message --------- DATE: Mon, 20 Oct 2003 10:55:57 To: CHARGE Cc: Hi; I was born on December, 3rd 1978 at St. Joesph Hospital in Hamilton, Ontario Canada. Born two months Premature I weighted 3 lbs 12 ozs and was very sick. I have a very rare syndrome called C.H.A.R.G.E. Syndrome, the doctors held little hope for my survival, with two holes in my heart, cranial nerve anomalities, facial paralisis, the inability to swallow on my own, blind in the left eye, deaf in both ears, gastroesophageal reflex, aspiration pneumonia, the first four vertabrates in my neck were missing which gave me a short neck and a lifetime of pain due to lack of movement and the inability to use the neck and shoulders like everyone else. 30 - 40 % of children with C.H.A.R.G.E. Syndrome will only make it to 5 years old, as many as 20% - 25% may not survive beyond 2 years of age despite their best efforts. I am now 24 years old and if it wasn't for the doctors, nurses, and specialists at St. Joesph Hospital, Mc Master Hospital, and Sick Children's Hospital I wouldn't be here today. If it wasn't for the love of my family and the kind of medical care I needed and received from my mother who is also a nurse, I wouldn't have had the will to survive. I started walking at 3 years old, got my hearing aids at 4, and started talking at 5. From the moment I was born the only way I received nutrition was to be fed through a G - Tube, today they call it a button, for the first two years I was fed through the mouth before the doctors put one in my stomach, and until I was 13 years old I was fed through a G - Tube in my stomach. For the first 5 years of my life every physical challenge that was thrown my way, I succeeded at, no matter what problem I came across I over came it. At 5 years old I began attending Queensdale Public School for the Hearing Impaired. I went through 5 years of a fun education that I loved, I grew up to be a happy, energetic, pratically normal 10 year old. Then I graduated from Queensdale and intergrated into Blessed Kateri Tekawitha School for the last three grades before going to High School. When I began grade six life changed for me, just because I was different from my classmates and new to the School they never took the effort to be my friend. Throughout the last seven years of my education I was an outsider, never was accepted for who I am, they neglected to include me and to try to be a friend. I craved for acceptence, approval, and to be appreciated by my classmates and teachers. Only three students and ten teachers from both Blessed Kateri Tekawitha and St. De Brebeauf ever acknowledged my existence. From the time I was ten 1/2 years old until I was 19 years old I hated myself, the way I looked, the way I sounded, the students intensified the fact that I was different and made me feel worthless. At 19 years old I graduated from St. De Brebeauf High School, my grandfather died from Cancer, and for the first time in years I finally loved who I am, what I sounded like, comfortable in my own skin. The year was 1998. Now at 24 years old I am attending Mohawk College to get my Certificate in Photography so that one day I can become a professional photographer. Throughout my life I taught myself how to swallow and at 13 years old I got rid of my G - Tube, an accomplishment not a lot of other kids have succeeded at who are unable to swallow themselves. At the end of March 2003, I lost my hearing and was hysterical that it would never return. I went to the doctor's and he put me on strong antibiotics to clear up any infections I might have, and for the next six weeks I had no hearing. At the beginning of May 2003 my hearing returned. We found out that I had an infection in the Cochlea, and that damaged my hearing to non - existence. I hope you liked the Story of My Life. Sincerely yours; Krista Bach. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2003 Report Share Posted October 22, 2003 Hey Welcome to the group, it was great to read ur story, i am a charger, from Australia,im 20, there are acouple ofotherCHARGers on this list to, i study criminal justice at uni, like u i had trouble with being " different " all through high school, but it changed alot when i went to uni and didnt know people and found that people dont really careif ur different so much, ive always hada problem with my ptosis,my eye appears half shut, but ive met great peoplewho just dont careandcansee through it all thereisa charge group called chargesyndromeKIDS that me and another charger co-mod, its not really reallyactive atm but feel free to join Belinda 20yr ChAR?gE MSN: belinda_83au YAHOO:belinda_83au EMAIL: Belinda_83au@... OR belinda83@... I Have CHARGE Syndrome. > Hi; > I was born on December, 3rd 1978 at St. Joesph Hospital in Hamilton, > Ontario Canada. Born two months Premature I weighted 3 lbs 12 ozs > and was very sick. I have a very rare syndrome called C.H.A.R.G.E. > Syndrome, the doctors held little hope for my survival, with two > holes in my heart, cranial nerve anomalities, facial paralisis, the > inability to swallow on my own, blind in the left eye, deaf in both > ears, gastroesophageal reflex, aspiration pneumonia, the first four > vertabrates in my neck were missing which gave me a short neck and a > lifetime of pain due to lack of movement and the inability to use > the neck and shoulders like everyone else. > 30 - 40 % of children with C.H.A.R.G.E. Syndrome will only make it > to 5 years old, as many as 20% - 25% may not survive beyond 2 years > of age despite their best efforts. I am now 24 years old and if it > wasn't for the doctors, nurses, and specialists at St. Joesph > Hospital, Mc Master Hospital, and Sick Children's Hospital I > wouldn't be here today. If it wasn't for the love of my family and > the kind of medical care I needed and received from my mother who is > also a nurse, I wouldn't have had the will to survive. > I started walking at 3 years old, got my hearing aids at 4, and > started talking at 5. From the moment I was born the only way I > received nutrition was to be fed through a G - Tube, today they call > it a button, for the first two years I was fed through the mouth > before the doctors put one in my stomach, and until I was 13 years > old I was fed through a G - Tube in my stomach. For the first 5 > years of my life every physical challenge that was thrown my way, I > succeeded at, no matter what problem I came across I over came it. > At 5 years old I began attending Queensdale Public School for the > Hearing Impaired. I went through 5 years of a fun education that I > loved, I grew up to be a happy, energetic, pratically normal 10 year > old. > Then I graduated from Queensdale and intergrated into Blessed Kateri > Tekawitha School for the last three grades before going to High > School. > When I began grade six life changed for me, just because I was > different from my classmates and new to the School they never took > the effort to be my friend. Throughout the last seven years of my > education I was an outsider, never was accepted for who I am, they > neglected to include me and to try to be a friend. > I craved for acceptence, approval, and to be appreciated by my > classmates and teachers. Only three students and ten teachers from > both Blessed Kateri Tekawitha and St. De Brebeauf ever > acknowledged my existence. From the time I was ten 1/2 years old > until I was 19 years old I hated myself, the way I looked, the way I > sounded, the students intensified the fact that I was different and > made me feel worthless. > At 19 years old I graduated from St. De Brebeauf High School, > my grandfather died from Cancer, and for the first time in years I > finally loved who I am, what I sounded like, comfortable in my own > skin. The year was 1998. > Now at 24 years old I am attending Mohawk College to get my > Certificate in Photography so that one day I can become a > professional photographer. Throughout my life I taught myself how to > swallow and at 13 years old I got rid of my G - Tube, an > accomplishment not a lot of other kids have succeeded at who are > unable to swallow themselves. > At the end of March 2003, I lost my hearing and was hysterical that > it would never return. I went to the doctor's and he put me on > strong antibiotics to clear up any infections I might have, and for > the next six weeks I had no hearing. At the beginning of May 2003 my > hearing returned. We found out that I had an infection in the > Cochlea, and that damaged my hearing to non - existence. > > I hope you liked the Story of My Life. > > Sincerely yours; Krista Bach. > > > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website > www.chargesyndrome.org or by calling 1-. > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.