I am interested in learning more about Menkes. I have friends who’s son died of Menkes at 11-1/2 months.
I have a 19 mo. old baby with menkes disease, I would like to know about recent studies, news, investigations or parents with the same problem.
I belong to the Yahoo Menkes group and joined there (and want to join here) because I have a 3-1/2 year old Menkes foster son. He has been with me since four days after his first birthday, and I was told the night he arrived in my home that he would not survive a week. He has, in the opinion of the genetics doctor we see, the worse Menkes case he has ever treated. I want to stay updated on anything pertaining to this horrible disease.
My son has Menkes Syndrome and I would like to meet other people who knows what I go through.
Hello.
My name is ByungSung and I live in Korea. My first son is diagnosed with Menkes Disease 4 month ago. He is now 10 months old. I have been looking for the meeting for parents who have son with Menkes disease. In Korea there are few this illness patients. According to the notice from son’s doctor, there are only 5 children with Menkes disease in Korea. In addition, most doctors do not know about Menkes disease. After my son is diagnosed as this disease, I have studied Menkes disease and found other parents in Korea to prepare for taking care of my son when he will become very sick. Fortunately, Until now, he is still healthy although he is always crying and very irritable.
I am thinking about Copper Histidine therapy. but my son’s doctor discourage me from injecting it into my son. In one side of my mind, I hope this therapy will heal my son. However, I am also very concerned about the side effects. my son’s doctor is concerned about side effect too.
I am a mother of a Menkes child. My boy, Jakob, died a few years ago at the age of 15 months. he had the “textbook” menkes, a real novelty for his doctors.
I am interested in trying to find out about genetic counseling, as my husband and I would like to find out if there are any options for carriers of this syndrome.
My name is Whitney Hamilton, I am 22 years old. My son, Matthew had Menkes Disease. He was born July 31, 2009 and died May 20, 2012.
Please if any of you are on fb, try to find me (Whitney Simpson Hamilton in Mississippi). I am a part of a Menkes' Moms group on facebook for parents and grandparents of menkes children.it is wonderful.