Wolf-Hirschhorn parents, family members, doctors and therapists are rising up and I LIKE IT.  The crowd is getting motivated to produce change and that makes my little heart go “pitter-patter” with excitement.  We are no longer willing to let outdated scientific studies with gloomy photographs of emotionless kids in corners, poor prognosis and all-encompassing phrases like “ALL CHILDREN WITH WOLF HIRSCHHORN SYNDROME [insert horrifying, not-even-accurate, fear-inducing statement here], be the INFORMATION that expecting WHS parents, newly diagnosed families, well-meaning doctors or the general public learn about our kids.  We are getting the word out that,

Wolf-Hirschhorn Syndrome IS NOT WHAT YOU THINK.

Most parents, when given the news that their child has or will have this rare chromosomal deletion, grab their laptops and get “googling.”  They will find a series of studies, eMedicine reports and other research documents that EACH paint a grim picture of life with WHS, a picture of a life with little to no hope.  It is likely, that the diagnosing physicians, unless they have previous experience with a patient with WHS, will simply relay the information that parents have already discovered from their fumbling internet research.  Parents will read that their children may never make eye contact with them, will be riddled with health complications, will likely never talk, walk, eat normally, play with toys, or display affection.  Parents will be told that they will be on this journey alone because the syndrome is so rare and they will never meet another Wolf-Hirschhorn family during the course of their lives.Most parents will succumb to fear and will most likely welcome fear’s friends depression and hopelessness into their already battered hearts and minds.  Parents will likely approach their WHS children with preconceived ideas of their limited potential and with minimal expectations.  The Wolf-Hirschhorn children – they will feel the despair of their caretakers and they will try to speak to their parents in all of those quiet, precious baby ways that…

Wolf-Hirschhorn Syndrome IS NOT WHAT YOU THINK.

The children will grow and accomplish, meet milestones and break barriers, they will leave the ridiculously inaccurate literature about their condition in the dust and simply take-off on the course of life that is ahead of them.  They will not be held down by what the internet, lack of research or uneducated professionals declare – instead they will declare through their miraculous lives that,

Wolf-Hirschhorn Syndrome IS NOT WHAT YOU THINK.

And the parents will rise up, seeing that if their children are not tethered by what the “world” thinks of them, then they should not be either.  They will start blogs, rally on facebook, write articles for local newspapers, and “be the change.”  They will host events, fund raise and share knowledge in an effort to bring awareness and hope that,

Wolf-Hirschhorn Syndrome IS NOT WHAT YOU THINK.

The children and parents will find friendship and acceptance with other families like their own and they will gather together for food, fun and fellowship.  They will share the trials and triumphs of life together and experience a peaceful community that intimately understands that,

Wolf-Hirschhorn Syndrome IS NOT WHAT YOU THINK.

And when words are simply not enough, they will have photographs and memories to remind them and display to others - that truly,

Wolf-Hirschhorn Syndrome IS NOT WHAT YOU THINK.

(CLICK ON PHOTOS TO ENLARGE.  All photos taken by Holly Reynolds of PFMF Photography Lancaster, PA)

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13 Responses to It’s Not What You Think

  1. Cathy O'Brien says:

    WOW – this is amazing! Beautifully written, and complimented by such amazing photos. You all look so very proud of your little ones, and they all look so content and happy. Wolf-Hirschhorn is NOT what people think – when people respond with ‘oh, I am so sorry to hear of her diagnosis’ my response is ‘WHY?’. I would not trade her for the world, as she’s made me realize so many things – the sheer delight of watching the garage door open, the exhilaration she feels when hearing her favorite song (Yo Gabba Gabba theme), and the pure love and unconditional happiness that she carries with her every single day, regardless of the health ailments plaguing her. These children are unique, precious little gifts, and I am so happy to see us all rally together to support and inform!

  2. maddles says:

    A fantastic read that the whole world should read x Well we could start with the medical profession x

  3. Stacey Wolfe says:

    What beautiful pictures…and as a mother of a Wolf-Hirschhorn child…how perfectly explained. The 3rd paragraph brought tears to my eyes.

  4. Shameen says:

    Lovin it!!!!!

  5. Nicole Halkyard says:

    LOVE this BLOG!!!!!!!!!!!!!!
    This is very well expressed… certainly could not have said it better myself.

    Truly sorry we missed this gathering Lancaster. Looks like it was much fun.
    Hope to catch you for the next one.

    Love to all!

    Nicole and Chris Halkyard
    Lianna ’01 NJ

  6. Julie says:

    Beautiful pics, and a well stated writing. I believe all of it. I am the mom of a now 26 year old daughter, Tiffany, who has been an amazing kid to have. She has accomplished so much more than what we were led to expect.

  7. Heather Joy says:

    You are able to say what I want to say but do not have the energy to put into words these days. Thank you. Let’s keep saying this. Keep spreading the word. Let’s change what the literature says and how the medical world views our kids. It starts from us, the parents of these incredible children. Again thank you for your words, your honesty and your ability to see.

  8. crivera75 says:

    Lauren,
    This is by far the best blog I have ever read! You have expressed my thoughts exactly! Thank you!

  9. Anonymous says:

    WOW!!!

  10. Janell says:

    This is beautiful! What an amazing gift to write with such calrity of just how wonderful our WHS kiddos are… and you are so right about the grime outlook first given to us when our little girl was diagnosed… However, we were lucky enough to have a follow upmeeting with the geneticist that diagnoised (which we hadn’t meant until then) who has already delt with WHS kids and told us to expect more than what we were told at first and what we found on the internet…. She continues to make improvements all the time… Thank you for the blog.

  11. Marlene s Butler says:

    I am a newly diagnosed Nana, in fact, Wyatt is still in the NICU in Louisville trying to grow. At least now we know that we hav a special little boy to love,and we will have lots of support thank you so much for the much needed information on this blog and please keep us informed.Wyatt is my 10th Grandbaby, and he is just darling!!

  12. Letty says:

    This is one of the many stories I wish I had read when my son was first diagnosed. My son who is 17 months old is lagging behind, but has much potential. He, like stated in your blog, has surpassed expectations. Great motivation!!!

  13. shirley bidnick says:

    You are a passionate poet. Photos are stunning.thank you.

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