Where to begin? I could write a book on everything that my two sons have gone through in their short but sweet time here on this earth. At the age of 24, I was blessed with a beautiful baby boy, and we named him Timmy (after his father). A few months went by, and we noticed that he was not responding like a normal baby. My concern was that he was not eating enough. We took him to the doctors, and they were not able to diagnosis him with anything. The doctors were baffled.

After being in and out of the hospital for a year or so, we met a doctor who had just graduated. She took one look at Timmy and said, “Do you mind if I take a piece of his hair? I want to run a test.” What would the harm be in that? A few days later, she confirmed her suspicions that Timmy had Menke’s kinky hair syndrome, a copper deficiency disease that caused the brain to deteriorate. I was told  the life expectancy was three years old and it only affected boys. During this time, I was also pregnant with another boy. With everything I knew, I went through with the pregnancy because we had a 50 % chance of having a healthy baby boy.

After birthing my second son, Joeuan, we ran tests right away. A few weeks later, we found out that he would have the same disease. Doctors worked to slow down the process, by inserting a shunt in both of my boys and giving regular copper shots. This disease caused the boys to be bedridden. They had no facial expressions; feeding tubes had to be put in.  When the boys were not in the hospital, my apartment became a hospital room for both, with nursing care 16 hours per day. It was overwhelming at times, but I had family available for support.

Finally, Timmy ended up in the hospital with respiratory syncytial virus (RSV). The doctors knew that he would not make it this time. I had to let him go, and that was the hardest thing I had to do. Now it was just me and Joeuan. Not having time to grieve, I knew that I had to focus on Joeuan. His third birthday came around, and he was still with me. During this time, I again became pregnant. Knowing this would be my last one, I found out that I was going to have yet another boy. I could not catch a break. I went through with the pregnancy and had a beautiful baby boy. All I could think of was: is he going to be okay? They ran a test, and a week later, my phone rings. The nurse is on the other end, and just like it was yesterday, she asked me if I was sitting down. I took a deep breath, and she said that my son will live a long, healthy life. I could not stop crying. She was crying too because she knew what I was going through.

Three years later, Joeuan stopped breathing at home and was rushed to the nearby hospital. There, they pronounced him dead. I could not stop crying. Thirteen years later, I think about these two every day and thank God that I had them for as long as I did—especially Joeuan. He lived to be six years old (three years more than expected). So now my theory in life is that I do not get upset about material things. They can be replaced; my two angels are not coming back. I have passed that on to my 12 year old healthy son, Jeremiah. I thank and treasure him each and every day.

 

6 thoughts on “Hair Test Reveals Timmy Has Menke’s Kinky Hair Syndrome, A Disease That Affects Only Boys”

  1. What a story. Thank you for being brave enough to share it here. Due to my genetic condition I won’t be able to have biological children and while that pains me to my soul, I know there’s a greater purpose…just like in your journey. Thank you for sharing it here.

  2. Hemantsing says:

    i hope you all live a happy life now on and nthng bad happens.. i hope i will b a good doctor and be able to help with these situations…

  3. Hemantsing says:

    and just adding to it, it is more common to males but females can be affected with Menkey’s hair

  4. Tina says:

    Hi. It’s funny how this story ends, because I had a grandson born with Menkes. He lived to be a year old. And his name was Jeremiah, oh how I miss him but not his suffering. So please take care of Jeremiah. And love on him for us. This has brought tears to my eyes.

  5. Michael Davis says:

    We too had 2 boys with Menke’s syndrome, one called James Stanley and the other called Geoffrey Eamon, at the time 1962 no one even had any idea as to what was wrong with James until an exchange doctor from America diagnosed Menke’s, she said that she had previously seen one case of this disease. James lived for 15 months and the 50th anniversary of his death in 2nd August 2014, Geoffrey lived for 3 years and he died on 24th August 1972.
    We do have 3 daughters who are perfectly healthy in fact the eldest just celebrated her 50th birthday on 7th July 2014, James dies when Michelle was 5 weeks old.

  6. Michael Davis says:

    We too had 2 boys with Menke’s syndrome, one called James Stanley and the other called Geoffrey Eamon, at the time 1962 no one even had any idea as to what was wrong with James until an exchange doctor from America diagnosed Menke’s, she said that she had previously seen one case of this disease. James lived for 15 months and the 50th anniversary of his death is 2nd August 2014, Geoffrey lived for 3 years and he died on 24th August 1972.
    We do have 3 daughters who are perfectly healthy in fact the eldest just celebrated her 50th birthday on 7th July 2014, James died when Michelle was 5 weeks old.

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