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Friday, February 6, 2015

What 22q11.2 Deletion Syndrome looks like in my home...

Last night on Grey's Anatomy there was a comment made about 22q11.2 Deletion Syndrome.  That is the syndrome that my Cam has. Unfortunately the comment was unkind and not accurate!

Feb 5th episode: 

Two doctors going over a patient's charts. First doctor says "The Mom's been pregnant 3 times, the first two were stillborn."
Second doctor replies "Well, this one will be too. 22q11 deletion ...She should just adopt!"


I want any parent that just found out their child has 22q11.2 DS to see this post and find hope.  Do some children die from complications from the syndrome?  Yes.  Is the syndrome hopeless or a death sentence?  NO!!  


I was told Cam may never speak...you can have full conversations with him.  He tells jokes, knows his letters and sounds, sings songs, and even talks naughty sometimes.  His speech is a little delayed and he is in speech therapy a few times a week...but guess what...so is my son with autism that doesn't have the syndrome.


Cam loves to cuddle and snuggle with me.  He is more loving and kinder than any other child I know.  His heart melts me and I could not live with out him!


Cam is braver than any of my other kids were.  He tries everything his older siblings do and doesn't let his syndrome get in the way of anything.  He is more resilient than any kid I know and has learned to be tough because of all that he has been through.  


He is sweet and compassionate to everyone he meets.  He works hard at everything he does.  He has an amazing spirit and I truly feel blessed to be his mother.  He fills up my soul and makes me happier than I ever thought possible.  I adore everything about him.


There are no guarantees in life...my life is proof of that!  My first husband Jake was a healthy hard working man and died at the age of 29.  I have 6 children and 3 of them have significant needs that make life harder sometimes.  We never know what is just around the corner.  


22q11.2 DS is not hopeless.  Will somethings be hard?  Yes!  Will you celebrate the little things even more?  Absolutely!  Will you grow into a better person raising a special needs child?  I have!  Will you appreciate everyday with your little one?  I do!  Will you get stressed?  For sure!  Will you spend more time in a hospital than other parents?  Maybe.  Will you find more love in your heart than you knew was even possible?  I did.  


My life is infinitely better because of my son with 22q11.2 Deletion Syndrome!




















This is the face of 22q11.2 Deletion Syndrome!

To read my original story click here.
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5 comments:

  1. Saw a friend post this petition on Facebook, and I thought of you. I don't know if you have seen this yet, but I thought I would post it here for you and others, just in case you haven't. Thank you for your post and for giving everyone a more accurate and true glimpse into what 22q11.2 really looks like. :) https://www.change.org/p/abc-state-the-accurate-facts-about-22q11-2-deletion-syndrome

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    1. Thanks Heather! I have seen it and signed it:) Thanks for putting up the link!

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  2. Hi Julie, I just started reading your blogs. You are as strong as ur kids are. I think if I was in ur shoes I may not be strong enough to move past everything. Then again when you have kids (which hopefully through adopting this year I will) they attend to give out more strength then what we understand. You Julie are strong. Keep up with how you handle things cause your doing an awesome job, oh yeah tell you son I will google 22Q cause now I'm interested :-) God bless to you all

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  3. Hello. My name is Amanda Ripsam I am 32 years old with 22q deletion syndrome. I have a father and three siblings who have 22q deletion syndrome. I also have my daughter who is 8 years old who has the 22q11.2 deletion syndrome. I am also a step mom to three teens, 21,16 and 18.
    I was born and raised in Toronto Ontario but live in Michigan. I also blog at www.mommiesquietplace.com
    I really would like to feature your blog on my meet and greet Fridays. Every Friday I Interview another blogger for my readers to get to know. Let me know if you are interested.

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  4. Please help us get our 22q11 baby girl to Australia for life saving heart surgery. #flyCaroline http://www.9news.com.au/national/2017/08/05/18/45/vietnam-baby-siezure-hospital-treatment https://www.gofundme.com/babyCaroline

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