| 1 - "Need Support for Adult with Moebius, from Senegal" |
| (by Sandy Goodwick) While we all know what 'our own' experiences with Moebius have been like, oftentimes we may wonder what things are like for people with Moebius in countries that may appear to be very different from our own. The following emails from the friend of a man who recently arrived from Senegal may serve to enlighten us all to some of the struggles others face while having Moebius... Tom Voorheis forwarded Ben's email to me ... (1) "Hello! I never heard of Moebius Syndrome Disorder until a few days ago when a 26 years young man from S�n�gal (west Africa) and friend of mine told me that he is suffering from it. He is born in S�n�gal and grew up there, as a child he had all the symptoms of MSD but local doctors were never able to identify it until a few years ago. My friend is full of life and very bright. He has a degree in accounting which he was never able to use due to his automatic elimination by employment interviewers based on his slight speech problem. He came to the US a couple of weeks ago to seek some help. He is a smart and wonderful person who has so much to offer and as a friend i want to do all i can to help him to find the help that is available to people who do live with Moebius Syndrome Disorder. I will be eternally grateful to receive information as well as referrals to social services and treatment center etc... I am desperately awaiting for your reply. Thank you Ben [email protected] 2) Cc: To Habib S. Hello Sandy, how do you do? Thank you so much for you very kind reply i highly appreciate it. My friends name is Habib and he arrived in the US a month ago from Senegal. He is staying with a friend in Raleigh, North Carolina. He came to the US in a desperate hope to find any type of help that might be available for people like him who have Moebius Syndrome Disorder, in Senegal even if doctors know about it these type of illnesses (can it be considered as such?) are not given any consideration mainly because of the country's lack of the financial resources and highly trained people who could raise awareness in the general people's mentality who tend to believe associate any mental or neurological disorder as a result of some witchcraft work or a curse from evil spirits to punish a family... Kids who have MSD or any thing in this category are rarely taken to the hospital, they are instead taken to seek the help of a "Marabout" which can be translated (not accurately) as a wiseman, an intercessor between men and the spirits...as once again it is enrooted in the popular beliefs that these are "things" that only can be dealt with on a strictly spiritual level. I do have a great respect with some of these beliefs but i also have seen so many people whose lives have been crushed (i can't find a better word) by a mentality that judges anyone with a neurological disorder as a unfit and unproductive part of our societe. And thought the families are in general extremely supportive, they also help to perpetuate that same belief. My friend Habib has been lucky to be from a very progressive family that did not consider him as not able to go to school and do everything that any normal child would do. As i have written to you Sandy in my first message i find Habib to be the most wonderful person that God has placed on my path, he has great heart, a great intelligence and great strength and sens of humour that despite so many hurts (and rejections) that he has experienced and still does from such a cruel, judgemental and segregated world, still laugh and make all his friends and family laugh as well. Habib needs all the support possible. One is first to help him to meet a local support group in Raleigh. He is here on a tourist visa that will expire in a couple of month, i know for a fact that only here in the US he would get the chance to prove his aptitudes and fulfill all of his dreams...So i am trying also to help him to find avenues that'll provide him the necessary status to remain in the US, go to college and to find work, on that matter every little information would be of help. Yes please add our names to your mailing list. Habib email is [email protected] And by the way he is not fluent in english but can fairly write in english. He already knows about you so please feel free to contact him. I'll play the role of the translator if necessary. Thank you 100 times for being so kind. Sincerely yours Omar ben" |