Menkes Friends

Share your Story!

Contact Us



My grandson Hunter, was born on August 22 2008. Hunter always seemed to be crying, but it never occurred to us that he was ill. At 3 1/2 months he still wasnt holding up his head. Finally the doctor had an MRI done and there was a problem. Thats when our nightmare began. Test were done on him, but everything was coming back normal.

Hunter started having infintile spasms and was constantly in the ER. Hunters hair started to grow in like a mohawk and we would make jokes because his dad had indian in him. He began therapy to try and build up his strength. It was hard to see our little guy cry during his therapy, he was just not feeling good. He was finally treated for reflux and it did help a little. During a visit to the ER because a young doctor asked if he was tested for menkes when she noticed his hair.

Hunter was admitted in the hospital and had his muscle biopsy done. Hunter wasnt keeping his weight up, so he also had to have a G-tube. His doctor had the blood test done to see if it was Menkes but he didnt think it would come back positive. The test came back positive, and we all were heart broken. He was 10 months old at this time. We were told he wouldn't be with us long. My daughter was 16 when she had Hunter. My child was having to experience a mothers nightmare of losing a child. Hunters parents started taking him to Dr. Kaler and copper shots were started. I never thought i could give shots! My daughter and Hunter's daddy showed me how to give shot by letting me poke them HA!

Hunter is now the happiest child i have ever seen. He never cries unless something is wrong with him. He Laughs all the time, He is so fun to be with.Hunter has had surgery for diverticulitis, and has had kidney stones. He has been seizure free for over a year! No more medicines are needed. In the winter Hunter always has problems with his breathing and is having to use his shaker vest to keep the fluids out of his lungs. The shaker vest has kept him out of the hospital.

Hunter will be 5 years old this year. We have been so Blessed to have him healthy, prayers do get answered!I know he will be needing his tonsils and adnoids removed in the near future to help him breath easier. Hunter does school at home, and PT. He loves water therapy, and now that winter is over he will be able to continue it. His entertainment is all about lights. He has some switch toys that he enjoys, and he likes his portable dvd player. Balloons are also fun for him, because they are light enough to hold. He can move his arms and legs, and move his head side to side. Hunter loves to be spun around in his wheelchair. He gets so excited he pushes his legs straight out and pulls his arms in,and is all grins. He laughs and laughs! For awhile he would go days without sleep.You could just hear him laughing all night long. Then he would sleep 24 hours, and then stay up a couple days. Now he sleeps through the night and has a schedule.For a while we would comment about all the things Hunter was missing out on, untill we realized that we were feeling bad for ourselves.Hunter isnt sad, he is happy.

Even though Hunter isn't verbal, he speaks with his eyes. I know he loves us by the way he responds to our voice. He will look for you when you walk away. Putting him down for bed is the hardest thing because he is nothing but grins, You just want to pick him back up and keep loving on him.I look forward to waking up every morning to hearing that giggle and seeing that big smile! I wanted to tell Hunters story so families can see that there is happy memories that we can hold on too.


Dee Dee (Hunter's Grandmother)


Posted: May, 2013

© The Menkes Foundation