Please take a moment to introduce yourself to the community. Everyone here has something to share about Menkes Kinky Hair Syndrome. For the discussion boards, we ask that you keep your full name and location private.
my name is jessica i am 26 years old i had him when i was still in high school 17 years old.
my son is now 8 years old born with menkes disease. we live in michigan. he is getting copper histidine injections. he was not diagnosed until 22 months old. i also have a 3 year old son who is healthy. jordan is on a feeding tube, has seizures, oxygen as needed and is in a wheel chair. he is my life. everyday is a struggle but he has taught me so much in life and i love him to death. that smile can melt your heart. or the way he talks in his own way. hes my angelbaby.
Hello, my name is Jackie and my son is James. He is about 14mo. right now and has Menkes. Its pretty severe they say. But he’s been fighting for a yr. now and we have high hopes! Just wanted to stop in and say Hi!
i am a mom of 2 daughters,a 6 yr. old and a 1 yr. old. i am also th mom of a son who was born june 21,2002 and died at home oct. 26,2003 of menkes.
I have a grandson with menkes syndrome. He is 15 months old.
Grandma of Menkes child
My son has Menkes disease and I want to correspond with others affected by this condition
Hi John! My son does also. Do you live in the United States? Hope to hear from you.
Jackie and James
my grandson was 1 jan 3 2006 evan passed away jan 23 2006 im having a hard time im his grandma my daughter also was 17 weeks pregnant in feb 2006 justin had it too so she was induced he was still born joanne ross
My son Graydon has Menkes.
Hi. My son Elijah has Menkes syndrome. I just want to learn all i can to help take better care of him. Thanks.
Familia que ha padecido la “Enfermedad de Menkes”
My son had Menkes. He passed away in 2002. I am interested in making contacts with anyone else who has a child suffering from this disorder. I would love to learn more about current treatments and genetic counseling.
My son was diagnosed 2 years ago, with Menkes disease. His name is Tate and we are from Wisconsin. he is 3 now and is doing very well. His story is: www.tatefriederick-godsangel-menkes.4t.com.
Hi, I’m mom of one angel named Seth Evan, who had Menkes, (05/04/05-07/13/06) and I love the support group, it really helped me a lot and I think he had a better life because of it (he had a well-informed mommy, who could fight for what he needed!). I’d like to connect with other family members and friends who have similar experiences.
Hi my name is Dolores and I have a son with Menkes Syndrome. We had our ups and downs with Him. On aug 2007 we almost lost our Jacob one week after his 9th birthday. His left lung collapsed and he couldnt breath on his own. He was on all these tubes and plugs and all the works. He was in for a whole month. Thank god he came out of all this good. Now we are about to celebrate his 10 birthday party soon and we couldnt be very happy with our son.
my 11 month old was diagnosed at 4 and a half with the classic form with no family history present. New treatments, strategies, other parents I would like to talk to.
Hi,
Our middle child, Nathan, was born with Menkes in 1981. He lived 14 wonderful years, and died in 1995. God blessed us with a great gift in giving us Nathan, and we’ll always be thankful. We’ll continue to have a big interest and concern for this disease, and want to stay involved with families who are living with it.
I think one of the most important things we can do is give help to others who are struggling to make sense of the disease and all it entails. It helps us to keep Nathan alive in our hearts, and it helps us to feel like we’re making a difference.
Jennifer Saks
Wife of Kraig and mom to Emilie (27), Matthew (23) and always, Nathan.
I work with/have a friend who has Menkes and I want to find a charity which does research into this disease so I and others can fundraise
My son Colin was born 4-12-06. He was diagnosed with Menkes at 3months. He spent 3 weeks in Bostons Children Hospital. He just truned 1. On may 29th he had a peg placed in and divutucula removed. he cann’t sit up or hold his head up, but he is happy and is very vocal.