Mi Life Is An Adventure

Mi crazy, wonderful, beautiful life.

1 in 50,000 August 7, 2011

This football stadium holds 50,000 people. Only one person in the crowd will have MHO.

Those are the odds that someone will be born with the genetic disorder Multiple Hereditary Osteochondromatosis or MHO for short.

MHO is caused by abnormalities in the EXT 1 and EXT 2 genes, resulting in benign tumours that grow on the long bones of children and teenagers, resulting in disfigurement and pain.

I just found out that my daughter has it.

Oh yeah, and as an adult, those benign tumours can actually turn into cancer.

I refuse to cry, I am trying really, really hard to not be pissed off, and I am trying to focus on the here and now. There is no room in my life for a pity party.

But right now, at 2 am on Saturday night, I am feeling alone, scared, angry, sad, and definitely not hopeful.

What does this mean for my beautiful daughter? She already has a wonky shoulder, we can see and feel the tumours on her knees and ribs. How are her peers going to treat her as they become more noticeable?  Are adults going to stare at her? Will people laugh and tease her? Will she come home from school in tears?

How do I prepare myself for the inevitable, especially when there isn’t much help, or hope out there?

I refuse to cry.


9 Responses to “1 in 50,000”

  1. Kristin Says:

    Crying isn’t a sign of weakness or defeat. You are understandably mourning what you thought your (and sweet P’s) life was going to be. I think you need to do that before you will be ready to accept this news and become the warrior mom that we all know you are, to take on this great challenge. Just let any of your ‘sisters’ know how we can help.

    • Christa Cox Says:

      Thanks Kristin!
      I’m afraid if I start to cry I won’t be able to stop. Just taking things one day at a time, and trying to process all the information. It has been a lot to take in in just 4 days.
      I like that you think I am a Warrior Mum, I hope one day soon, I can be!
      Hugs Sister ❤

  2. Sam Says:

    Oh Christa I just read Shaughn’s post I am so sorry. Poor Pants.. When did you learn about this? Message me or phone me! Much Love and Hugs to you all.

    The Harris Clan

  3. Christa, We will talk. There are people out there to support and help you. You will be welcome. (I just read your other blog too.)
    I am looking forward to talking Friday. Hang in there. This IS the time to be a warrior. I know. I am one too. Diana

    • Christa Cox Says:

      Thanks Diana,
      I am really looking forward to speaking with you too. I VERY much appreciate the website you sent to me, I think when I first started searching I found it, but due to the overwhelmedness I did not give it a thorough read.
      I have spent the last 2 days reading it whenever I had a few minutes. VERY informative and helpful. I can’t thank you enough.
      Talk to you tomorrow!

  4. Jessica Says:

    hi! im 15, and i also have MHO. in fact, my dad, brother, and many other family members have this.
    the main problem ive had was having the buildups grow in my knees and hips. if your daughter feels pain, i found that compressing the area and lots of ice takes it away. take care!

    • Christa Says:

      Hi Jessica!
      Thanks for your comment, we are finally getting a grip on the MHO/MHE thing. Our daughter just had her yearly visit with her ortho dr and things look good, some surgery in the next two years for her shoulder and knees. So far so good!
      Are you part of the Bumpy Bone Club Facebook page???

  5. Aanigoo Says:

    Hello Christa, well, first sorry for my english, I’m brazilian and well, I do not have much practice… but I have MHO too, and I’m 26 now. I just got touched by your post. My mom had pass by this situation two decades ago, and no doctor here used to know that disease at the time, and we couldn’t get information about, future consequences, if it would stop someday, nothing… I had pass by four surgeries, took off some big bones, and it was hard in some way. But my mom made all difference in the process… and, with what I read here, I think your daughter has much strength to get from hers. But some advice of my own experience includes never try to tell her that this is nothing, cause she inevitably will care about that, and do not need to feel bad for caring for something that everybody says it’s nothing to care about (even with the intention of making her feel better, what does not come happening). She is different, yes, she is, she must accept that and you must focus on the way she will deal with that, and not in try to ignore it to have a “normal life”. You must talk with her about the attitude she can have, in not fall in the trap of self pity, and take that chance life gave to her of developing a inner strength and overcoming that a few people have the REAL opportunity in life (even it being hard) to do. In this condition I’ve learned to focus on many greatest things than my own suffering, than my own myself, my own body. That I have more reasons to be happy with what I have than to be sad with what I do not. I will not be a hypocrite and say that it don’t bother me, but I’ve learned to be more than that, and not defined by that. There are only a few moments that I feel bad today, and in the future, I hope that will be none of them, cause thats what I want for me. She will learn it too, that this is so much bigger than her body or her frustrations. She will feel angry, weak and things like that sometimes… just be at her side and help her to deal with all feelings, never ignoring none of them, always talking, crying if you need, but focusing on the constructive attitudes, on the inner growing. And I think you should stimulate that, the force, the overcoming. Never ignore the problem, face it, in the better possible way, taking the opportunity to grow inside, evolve as person. You’ll be together, and it will make a lot of difference. Be strong and stimulate her to be just strong as you are, or even more! Oh yes she can, cause we learn to be strong when we REALLY need to be, when being strong is our only choice to keep going. Anything I can help you can just tell me ok, good luck to you two =]

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