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Tuesday, December 6, 2011

All I Want for Christmas

Ah, the second week of Advent!  Preparing our hearts and our homes for Christmas: spending more time in prayer and reading more Scripture, figuring out what to get for each of the people on our gift list, planning this year's Christmas card, making plans for where and how to spend Christmas Eve and Christmas Day.  We're listening to Christmas carols on the radio, watching Christmas movies on Hulu, drinking eggnog, and practically suffocating under the weight of all this wrapping paper, ha ha!  Oh, what a magical time of the year!

I've been asked by more than a few people, "So Pia, what do you want for Christmas?" At the risk of sounding like a broken record (is anyone old enough to remember what that sounds like besides me?  Ha ha!), for the third Christmas in a row, my answer is this:

Great graphic by Angie (click to go to her FB page)

Kat has been suffering from IH since late summer 2009.  That's over two years now.  Two years of nonstop headache and other debilitating symptoms and countless doctor/hospital/ER visits without a cure or any real relief in sight.  Pain meds don't help her, not even the strongest ones out there.  Many people we know still don't even believe that what she has is a "real" disease.

It's hard as a mom to watch your daughter suffer so much all the time and not be able to do anything about it.  It's even harder to see her have to deal with people who have no sympathy for her and cut her no slack, and even accuse her of faking it to get attention.  And yet, that's exactly what she and so many other IH sufferers experience every day.

This was Kat and me in 2008.  The first photo in this post was also taken that year.  Wow, I miss those days!  See her bright eyes and easy smile?  Yep, that was my girl!

This was her last summer:

And this:

And this:

Not exactly the state in which I want my youngest girl to be, you know?  But this has become our "normal".  Every day.  Every night.  All the time in between.  Pain, pain, and more pain.  And Kat is not the only one suffering from this awful rare disease.  We have met so many through Facebook just this year -- children, adults, male and female.  This disease does not discriminate, despite what the doctors tell you.  Anyone can get it.  And many, like Kat, don't even know how they did.

It's time to make IH known.  It's time to raise awareness and raise funds.  It's time to find a cure!

So how can you help me get my Christmas gift this year?  Visit the Intracranial Hypertension Research Foundation's website by clicking on the blue and green awareness ribbon above.  Learn about IH.  Share that info with your family and friends.  Donate to the IH Research Foundation to help fund research for a cure.

You can order one of these cool lapel pins or a t-shirt or a bracelet, and the proceeds will go toward finding a cure for IH.  Every little bit helps, and all of it is greatly appreciated.  You really can make a difference, no matter what size your gift is.

Please help us find a cure.  Because right now, the only thing that gives Kat any relief is this:

And that lasts only about 5-6 hours and then the headache is back, accompanied by back pain.

An alternative treatment is this:

Ventriculoperitoneal Shunt

Brain surgery to divert the excess cerebrospinal fluid from her brain to her abdomen.  A temporary fix that has its own severe complications.  Brain surgery that doesn't necessarily eliminate the headache, only lessens it.  According to her neurologist, the best we can hope for with this surgery would be to save her eyesight and she will likely continue to have the headache.  So with no other option, we're in talks with Kat's medical team to consider having this done sooner rather than later.

There is a cure out there.  Somewhere.  Let's find it.  Together.  So that Kat and all the other men, women, and children who suffer from this disease can go back to living normal, healthy, pain free lives.

~ Pia


  1. Wow Pia, thank you for sharing yours and Kat's story on this debilitating disease. Your right, there has to be a cure out there somewhere, lets find it. All the best. -Lisa

  2. Pia, I met your daughter Kat through a support page, and can't thank you enough for raising a wonderful girl. My son Braden, who is 12, was diagnosed right before Thanksgiving, and she has helped me so much to understand this horrible disease. She has helped him so much too. He feels less "crazy" knowing someone understands. You should know your daughter is truly a gem!