Guest guest Posted March 17, 2001 Report Share Posted March 17, 2001 > In @y..., jbmistletoe@a... wrote: > A member who lives in washington state called me and asked for help >she has a 14 year old son who is dyspraxic diagnosed at age 6. The >schools don't know anything >about dyspraxia, I am mailing her >information. She needs to find an advocate to help her also. The >school is cutting down on his speech and ot, and stopped the bus >transportation. He also has >circulation problems in his hands. She >needs help fighting the school system because they don't >want to >cover the bus ride or therapies for her son. She doesn't have a >computer . Hi Jeanne, Bless you, I find this heartwarming that you are reaching out to find support for this mother and her son. This is most unfortunate as we continually hear of our children's struggles trying to receive appropriate services throughout their school district. It's my understanding that as children enter secondary school it becomes more difficult rendering these services. But not impossible!! Just a thought for those who are not aware and know of people that would benefit through online groups and listservs to please inform parents that they can access a free account with hotmail or . I'm sure there are others widely used. With this they can access online with any computer that could be available to them. Such as through their Community Library, Schools, friends, work ect... I also recommended this to a dear friend whose computer broke down and now she goes to her local library once a week to use their public computer and has a personal account with . She is now able to receive support and information through various listservs which she subscribes on digest. What's great also she drops me a note each week and we are able to keep in touch with each other. Jeanne, I will contact you personally as I would like to participate in helping this mother and her son. Like my son Khalid her child is 14, being that this did come close to heart, as all apraxic children do. I understand her heartache, for her son has been on this journey much too long and I can only imagine her despair in looking for help. Perhaps she and I can exchange phone numbers! I will be in touch with you on this and see what more I can do to help with this! Sincerely, Mustafa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2005 Report Share Posted March 8, 2005 I AM 40 AND WAS BORN WITH WHAT THEY CALLED EPICANTHUS IN THOSE DAYS I HAD SEVERAL OPERATIONS TO WIDEN MY EYES AND ALSO TO LIFT THE LIDS INCLUDING HAVING A BONE TRANSPLANT FROM MY HIP TO MY NOSE TO TRY AND LIFT THE FOLDS BECAUSE I WAS BORN WITHOUT A BRIDGE IN MY NOSE I NOW HAVE 3 CHILDREN AGED 16 14 12 MY FIRST WAS BORN WITH NO SYMPTOMS MY SECOND A BOY WAS BORN WITH BPES AND MY 3RD A DAUGHTER WAS ALSO BORN WITH BPES I HAVE STRUGGLED TO GET SOME OF THE QUESTIONS ANSWERED THAT I WOULD LIKE TO NO CAN ANYBODY HELP QUESTIONS 1ST IS IT HEREDITORY AS I CANNOT TRACE IT ANYWHERE BACK IN MY FAMILY I ALSO HAVE 2 SISTERS WHO HAVE SEVEN CHILDREN BETWEEN THEM BOYS AND GIRLS AND NONE OF THEM HAVE ANY SYMPTOMS 2ND WILL MY CHILDREN PASS IT ON TO THERE CHILDREN 3RD IS IT CORRECT THAT MY DAUGHTER COULD SUFFER INFERTILLITY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2005 Report Share Posted March 8, 2005 Hi there....Welcome to the group:) To answer your questions: 1/ It is herediatory if you actually have bpes, you have a 50/50 chance of passing it your baby. 2/ Your boy and girl that do have bpes, have a 50/50 chance of passing it to there baby, your 1st that does not have it will not pass it on as he/she does not carry the gene. This is our situation, except my husband and myself do not have bpes, nor anyone else on our family, our 1st son doesn't have it, but our 2nd son does???? So apparently our 1st son without it, will not carry it on as he does not have the gene, but our 2nd son who actually has bpes will have that 50/50 chance, but we have been told that if he does have a baby without bpes, then the bpes would stop at him, and probably not be seen again in the family? There is many more people in the group to allaborate much more than I:) 3/ Yes, if your daughter has type1 bpes, then she could go through POF...(premature ovarian failure), but I think woman in this group who have type 1 still have had a baby, perhaps having a baby earlier rather than later in age. If she is type 2 then she would not. You can have tests to find out which type you are. Anyways hope that helps a bit.....As I said you can ask many questions within the group and there is someone full of much more knowledge on this condtion amongst all of us:) Leanne:) NZ -- blepharophimosis can anyone help I AM 40 AND WAS BORN WITH WHAT THEY CALLED EPICANTHUS IN THOSE DAYS I HAD SEVERAL OPERATIONS TO WIDEN MY EYES AND ALSO TO LIFT THE LIDS INCLUDING HAVING A BONE TRANSPLANT FROM MY HIP TO MY NOSE TO TRY AND LIFT THE FOLDS BECAUSE I WAS BORN WITHOUT A BRIDGE IN MY NOSE I NOW HAVE 3 CHILDREN AGED 16 14 12 MY FIRST WAS BORN WITH NO SYMPTOMS MY SECOND A BOY WAS BORN WITH BPES AND MY 3RD A DAUGHTER WAS ALSO BORN WITH BPES I HAVE STRUGGLED TO GET SOME OF THE QUESTIONS ANSWERED THAT I WOULD LIKE TO NO CAN ANYBODY HELP QUESTIONS 1ST IS IT HEREDITORY AS I CANNOT TRACE IT ANYWHERE BACK IN MY FAMILY I ALSO HAVE 2 SISTERS WHO HAVE SEVEN CHILDREN BETWEEN THEM BOYS AND GIRLS AND NONE OF THEM HAVE ANY SYMPTOMS 2ND WILL MY CHILDREN PASS IT ON TO THERE CHILDREN 3RD IS IT CORRECT THAT MY DAUGHTER COULD SUFFER INFERTILLITY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2005 Report Share Posted March 8, 2005 Hi I am 34 and I have BPES and so does my grandpa, dad and my infant daughter. It sounds like you were the first in your family to have it, (a gene mutates spontaneously and causes the trait). There are a number of people in this group whose children are the first to have BPES. In my family my grandfather was the first and only until my dad was born. At that time no one could understand why my grandpa was the only one to have the trait when he had lots of brothers and sisters. We only recently learned that anyone can get BPES through gene mutation, although it is rare. If one of the parents has BPES, there is always a 50/50 chance with each pregnancy of passing on the gene, it is a dominant gene. There are two types of BPES and one is associated with premature ovarian failure, POF seems to develop differently in people and develop over time. I don't know if I have POF or if my daughter will have it. Some other women in this group know for certain that they have POF. My daughter is 7 months old, she had slings put in, how are your kids doing? Beth > > I AM 40 AND WAS BORN WITH WHAT THEY CALLED EPICANTHUS IN THOSE DAYS I > HAD SEVERAL OPERATIONS TO WIDEN MY EYES AND ALSO TO LIFT THE LIDS > INCLUDING HAVING A BONE TRANSPLANT FROM MY HIP TO MY NOSE TO TRY AND > LIFT THE FOLDS BECAUSE I WAS BORN WITHOUT A BRIDGE IN MY NOSE > I NOW HAVE 3 CHILDREN AGED 16 14 12 MY FIRST WAS BORN WITH NO > SYMPTOMS MY SECOND A BOY WAS BORN WITH BPES AND MY 3RD A DAUGHTER WAS > ALSO BORN WITH BPES > I HAVE STRUGGLED TO GET SOME OF THE QUESTIONS ANSWERED THAT I WOULD > LIKE TO NO CAN ANYBODY HELP > QUESTIONS > 1ST IS IT HEREDITORY AS I CANNOT TRACE IT ANYWHERE BACK IN MY FAMILY > I ALSO HAVE 2 SISTERS WHO HAVE SEVEN CHILDREN BETWEEN THEM BOYS AND > GIRLS AND NONE OF THEM HAVE ANY SYMPTOMS > 2ND WILL MY CHILDREN PASS IT ON TO THERE CHILDREN > 3RD IS IT CORRECT THAT MY DAUGHTER COULD SUFFER INFERTILLITY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2005 Report Share Posted March 9, 2005 thank you for the reply Dolph i am beginning to understand a lot more nom i have discovered this web site regards steve Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2005 Report Share Posted March 9, 2005 thank you beth for your reply i am beginning to understand a lot mnore from this web site my children are now at the stage where they can make there own minds up whether they want to go through any more turmoil with operations all i cAN DO IS TRY AND GUIDE THEM ONCE AGAIN THANK YOU FOR THE REPLY STEVE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2005 Report Share Posted March 9, 2005 THANK YOU FOR YOUR REPLY LEANNE BECAUSE OF THIS QWEB SITE I AM BEGINNING TO UNDERSTAND A LOT MORE THAN WHAT THE DOCTORS HAVE EVER EXPLAINED ONCE AGAIN THANK YOU STEVE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2005 Report Share Posted March 9, 2005 There are no people with BPES in my family or my wifes family. Our son (32) has BPES our daughter (30) has not Our sons daughter (11 months) has BPES If one of the parents has BPES chances of a child with BPES is 50% Chances of infertility for a girl with BPES is 50% regards, Dolph Heideman From: steve123x2001 Date: 03/08/05 20:51:06 blepharophimosis Subject: blepharophimosis can anyone help I AM 40 AND WAS BORN WITH WHAT THEY CALLED EPICANTHUS IN THOSE DAYS I HAD SEVERAL OPERATIONS TO WIDEN MY EYES AND ALSO TO LIFT THE LIDS INCLUDING HAVING A BONE TRANSPLANT FROM MY HIP TO MY NOSE TO TRY AND LIFT THE FOLDS BECAUSE I WAS BORN WITHOUT A BRIDGE IN MY NOSE I NOW HAVE 3 CHILDREN AGED 16 14 12 MY FIRST WAS BORN WITH NO SYMPTOMS MY SECOND A BOY WAS BORN WITH BPES AND MY 3RD A DAUGHTER WAS ALSO BORN WITH BPES I HAVE STRUGGLED TO GET SOME OF THE QUESTIONS ANSWERED THAT I WOULD LIKE TO NO CAN ANYBODY HELP QUESTIONS 1ST IS IT HEREDITORY AS I CANNOT TRACE IT ANYWHERE BACK IN MY FAMILY I ALSO HAVE 2 SISTERS WHO HAVE SEVEN CHILDREN BETWEEN THEM BOYS AND GIRLS AND NONE OF THEM HAVE ANY SYMPTOMS 2ND WILL MY CHILDREN PASS IT ON TO THERE CHILDREN 3RD IS IT CORRECT THAT MY DAUGHTER COULD SUFFER INFERTILLITY 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.