Tuesday, September 9, 2014

Emily's Hope, Fibular Hememelia and How You Can Help: An Opportunity for Kindness and Compassion

Children's Hospital of Michigan/Children's DMC.org


Once Upon a Time 
Like me, you may never have heard of fibular hememelia.  This post hopes to change all that.  You see, once upon a time, I went to college with a group of gals at MSU with whom I have maintained relationships for more than 30 years.  Recently, I learned that one of those friends has a daughter who is facing a life-changing surgery this week.  Her condition: fibular hememelia. When I heard of this,  I knew I had to help get the word out about this beautiful young woman, her struggles and hope for a better tomorrow.  Both Emily and her mom agreed to share her story.  A very brave girl, indeed.  After surgery, she faces up to a year of rehab and treatment, followed by another surgery.  What's more, is that she is courageous enough to share about her experiences so that maybe another child can benefit. Here is her story, told by her mother, my friend: 

    Emily's Story 
Emily is a 15 year old girl who was born with a limb deformity called fibular hememelia. She is missing part of her fibula, ankle bone and her little toe.Her right foot was twisted backwards (see photo).


Emily as a baby.  Prior to any surgery.

She had surgery at 6 months old to correct her foot (see photo below) so she could learn to walk. As she grew, the left leg grew normally, but the right leg didn't and the length discrepancy has grown every year. Now her right leg is almost 4 inches shorter than the left so she walks with a pronounced limp. Kids can be cruel and she has been teased frequently. 


Emily after her surgery at 6 months of age.

No Great Treatment Options 
We have been seeking treatment for years but the options were so hideous (amputation, or the popular external fixater cuff with pins sticking out of the leg). There is a huge risk of infection with the latter treatment. We would never consider amputation. The only two hospitals in Michigan that deal with this disability are the University of Michigan medical center and Children's Hospital of Detroit.
    Cutting Edge Treatment 
There is a brand new, cutting edge procedure that was just approved in the United States and has never been performed in Michigan. The new technique is called "Precice Nail" and is performed by cutting the bone and inserting a "nail."  Four times a day for seven months we will apply an extremely strong magnet that will lengthen the bone. Everything is internal.
    The surgery will take place at Children's Hospital of Michigan, under  
    the skilled hands of Emily's surgeon, Dr. Ahmed Bazzi,  this week.

   Pain, but Gain 
The most difficult and painful part of the procedure is the physical therapy to lengthen the muscles and tissues along with the bone. It is excruciatingly painful. After 7 months, or as long as she can tolerate, she will have another surgery to remove the nail and another long pin that will be inserted to stabilize her ankle throughout the process. After that, she will a boot on her foot for several weeks while everything stabilizes, so when it's all said and done, the process will probably take close to a year. 
This is a huge undertaking for Emily and the family and all good wishes are appreciated!
It's Not Over, Yet!

Now you know the story can't end here!  If you've ever had a child who faced a medical issue, you know how imperative support can be.   If your child has never faced a major medical issue, you are likely filled with gratitude.  Chances are, if you read this blog, you are concerned about social-emotional skills and teaching your child to reach out and be kind to everyone.  Sometimes that includes perfect strangers.  They always say the true measure of our kindness is when we do something for someone who can never pay us back.  Here's your chance.

Send Love 

Let's show Emily some love by sending cards, letters and even hand-drawn pictures from your little ones to brighten up Emily's recovery period, which will be a long one.  Let's show some Kidlutions' lovin' to a gal who could use your support.

Send your greetings and good wishes to:

Patrick Seeberg/Emily
Motor
1301 West Long Lake Road, Suite 300
Troy, MI 48098

There's More

Emily's recovery will be a long, arduous journey.  There are plans in place to start a facebook page to support her over the long haul.  Please check back here soon, to find all the details.

Thanks from the bottom of my heart!

Oh, and One More Thing

The day this posts is Emily's birthday!  It will be the last birthday she spends with one leg much longer than the other.  Now, that's something to celebrate!



Happy Birthday, Emily!




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