Menkes Kids Stories

Hello all, my name is Heather Ackman.  I have 6 children.  My daughter is 15 years of age, I have twins that we lost prematurely, who would be 12.  We think that they are the first of our Menkes' boys.  Then Zachariah, who passed away at 13 months January 2001.  He would be 11 in January.  Gabe is another miracle, our only boy without Menkes, he is 8.  The Zephaniah, he is 5, and for sure a miracle.  He has Menkes', but I carry the worst deletion that Dr. Kaler at the NIH has ever seen in a living boy, let alone one who is doing as well as Zeph is.

Our story has been a long one, and I won't bore you with all the details.  After 10 years without my first son, I finally can say I am thankful for Menkes.  I know how that sounds, however without it, my son wouldn't be the kid he is today, he wouldn't have touched so many lives, he wouldn't be the testimony he is to God's touch, and we wouldn't be the family we are today.  This disease that I carry, has strengthened our family to a degree I thought wouldn't be possible.  My daughter plans on going into Physical or Occupational Therapy because of it.  My kids are sensitive to other special needs kids, because they have a special needs brother.  Do I wish that I had Menkes' to carry? Of course not.  But, I do know that even though it is a daily struggle, and we know the likely outcome for our son, I know that he wouldn't be the Zeph I know and love to pieces, without it.  So today, the day before Thanksgiving, I am thankful for what Menkes' has brought to our family.  Friends, Physicians who are now family, strength, and so much more than I can list.   I wish all of you a very Happy Thanksgiving, may you all have a wonderful day with your families!!  If anyone is on facebook, check me out there, we have many Menkes parents online there too. 

My name is Tara, I am 36 years old.  I am the mother of TWO menkes boys, Isaiah Angelo 9/23/07-5/14/08, and Tarron Elijah 11/2/09. 

my son jordan is now 11 1/2 years old with menkes disease.  he wasnt diagnosed until 22 months old.  we started him on the copper histidine shots.  hes been thru alot but currently is doing great  

we are pregnant again with a little boy who also has menkes disease he will be born in february.  and we are trying to get as much information about dr kalers study as we can before then.  our plan is to have him in his study as soon as hes born.

tengo 34 años casada, con un hijo de 5 años con menkes ignacio que es mi vida

hi i have 5 kids 4 boy and 1 girl and 3 of my boy have menkes the are 12 9 and 6

my baby isaac turn and angel on dic 6 2010 and my other  2 boy doing realy good the walk and  the on the school an small group  and i love you my kids the my live the always smile

This is Camron he's 3 yrs old he 's got Menkes  he was diganosed at birth he had a Brother Nathaniel who passed away 5 yrs ago .Camron started treatment at the NIH at 7 days old hes just like any other 3 yr old he is going to preschool and loves to smile . He is truely a walking testominey that god does exist