Monday, May 14, 2012

International Cri du Chat Awareness Week

This week is International Cri du Chat Awareness week!  This means that all of the parents and medical professionals that are involved with children and adults who are missing a portion of their 5th chromosome are raising awareness for Hailey's disorder.

As most of my readers know, Hailey was diagnosed with cri du chat when she was about 3 months old.  We got the official diagnosis and had our guts kicked in, just like most other families who have had this rare and unresearched disorder handed to them.  Most doctors and professionals who dole this disorder out do so in a very uneducated way.  It isn't that the doctors don't care or that they are unfeeling or that they want to make us parents feel like crap...That just isn't the case.  The thing is that cri du chat just isn't very well known.  It is one of those chromosomal abnormalities that happens every once in awhile.  Most doctors only come across it once or twice in their careers.  For once in these professionals lives, they are at a loss...and in our experience, they just don't handle that very well.  I would love to say that we were lucky and we got a doctor who knew what they were talking about.  The fact is, that we didn't get lucky and he didn't know what he was talking about.

So when he told us that Hailey had Cri du Chat syndrome, he gave us the same horrible paragraph printed from the same horrible genetics book that most of us parents received during the diagnosis.  It said things like "severe mental retardation", "will not walk", "no communication" etc. etc. etc.  That is the reason that we are having this week of awareness.  And even though I have been emotional spent lately and have not been blogging, I cannot let this week go by without frequent blogs.

There are new children born with Cri du Chat every year.  1 in every 50,000 births so the statistics say.  And every year there are new families that are handed the same horrible old printed out paragraph from the same horrible genetics book that they got in medical school.  Our goal is that we educate these professionals so that they stop scaring the crap out of our new families, so that these families can have not only some hope but also some REAL statistics...some REAL facts.

The facts are that some of our children are really severe.  Hailey sits on the more severe side of the syndrome.  That is a fact.  But she does walk.  She does have some speech.  She most certainly is a valuable member of our community and most definitely a valuable member of our family.  She has taught us all to be better people, to be more accepting and more loving...She is amazing.

To the doctors who told me that she would never walk, I know that you enjoyed when I brought her in to your office and showed you how she ran...and I hope that you remember her whenever you encounter another child with cri du chat in your practice.

To the doctors who told me that she would never speak, I know that you will never forget when she screamed NO and called for "mommy" by name when you tried to take a blood sample from her.

To the doctors who told me to put her into an institution, I know that once you saw the way she lit up her little sisters face when she tickled her that you would never again recommend that for another child with Cri du Chat.

I hope that people who read this will remember my daughter and the next time that they come across the word Cri du Chat or a child with her features, they will know and they will be AWARE!!!

6 comments:

  1. Perfectly written!

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  2. What a beautiful post about your beautiful girl. I'm so sorry that you had doctors who were so uninformed. We were so lucky when we got Olivia's diagnosis. Her doctor told us to, "Take her home, let her show you what she can do. Don't do research because it's all outdated and she WILL thrive at home."

    We're incredibly lucky to live in a time when therapies abound and our children can and do surprise everyone.

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    1. Had a ditto geneticist experience with Parker 26 years ago. Yale University...supposedly the most advanced information on 5p-.
      Tommie...you were very lucky...my gut still hurts from those doctors with absolutely no compassion whatsoever....and they were ALL WRONG!

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  3. Success is the best revenge, Hailey. go get 'em!! Here's a post we did to honor a friend and International Cri du Chat Awareness Week http://bit.ly/Kg3K6A

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  4. Success is the best revenge, Hailey. go get 'em!! Here's a post we did to honor a friend and International Cri du Chat Awareness Week http://bit.ly/Kg3K6A

    ReplyDelete