2.06.2012

Blogger of the Week: A Happy Girl

Hey Guys!
Today we have the guest post from this week's Blog of the Week! Now, I know I said I only pick bloggers with 400 followers or less, but I felt like this was a special situation that needed to be shared. This week's blogger of the week is Tahnie from her blog "A Happy Girl". Tahnie has a rare disease and has an even rarer daughter. You see, her daughter has defied all odds, just by being born. Tahnie has to fight every day to stay alive- for her little girl Sookie. In honor of Sookie's 2nd birthday Tahnie is raising money to help with research for this disease she has and has a goal of $2000. I KNOW that I have such awesome readers that can help her reach that goal. BUT, why am I telling you all of this when I have Tahnie, right here, to tell you herself?! Take it away Tahnie!


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Hi Gentri Lee gals! My name is Tahnie and I blog over at a happy girl


I am beyond blessed to be here today. I adore blog land and the incredible people I have met through this fun little world. Gentri is a true gem and has a heart of absolute gold!






To give you a glimpse of my daily adventures, first and foremost I am a momma to our miracle girl, Sookie Sierra who just turned two on February 1st! I live in a little house of dreams in Utah with the two loves of my life. Mr. Happy Girl and I met through match.com and I never would have thought that would be where our story began, but it is. Life is crazy like that. ;)



I am:
A Redhead
A dreamer.
A fighter.
A writer.
A momma.
Someone who chooses JOY,
Knocking down walls
Saying YES, when doctors have insisted no.
LIVING with a disease (cystinosis) that only affects a very small group, about 500 in the United States.
I am here to suck the marrow out of every day of this wild and precious life.



My life has been full of health challenges, to say the least. When I was diagnosed with Cystinois at 18 months, doctors basically told my parents to take me home to die; that I would not live past my 10th birthday. I am 28 today. Cystinosis has taken the lives of many of my friends, before their 30th birthdays. The disease causes my body to make too much cystine (an amino acid) and therefore it builds up in every cell in my body, creating crystals and causing cell death. Renal failure is often the first major complication of the illness; I had a kidney transplant when I was 11 years old. Crystals build up in my eyes as well and I need to put special eyedrops in my eyes every hour I am awake in order to prevent blindness. These eyedrops are not yet FDA approved and it is incredibly complicated to acquire them. I cannot just go to Walgreens and pick them up. ;)

There is no cure for Cystinosis. The only treatment available is a medication that causes side effects that echo those of chemotherapy and this drug must be taken every 6 hours, of every day.

I do not like to use the word "suffer" to describe my life in any way, shape, or form. While there has been tremendous amounts of pain, this disease has given me so much more than it will ever take away from me. I chase joy. I create joy. I choose joy. I truly believe happiness is always an option, no matter what you are going through.

Because it is so dangerous for a woman with Cystinosis to go through a pregnancy, our sweet Sookie is 1 of about 10 in the world. There are only a few other women (with Cystinosis) who have been through the journey of an incredibly high risk pregnancy and have survived. We thank God and the stars above for each and every minute we have had as a family of three. (And that my transplanted kidney survived the pregnancy! Which is an entirely giant miracle in and of itself!)

Recently, I wrote and published the most difficult blog post I've ever shared. It was tough, but necessary.

In honor of Sookie's 2nd birthday, we have created a wish page through the causes organization. Muscle wasting is a severe complication of Cystinosis and because in the past, adults with the disease generally have not lived as long as adults are now, there has not been any research conducted on this issue. Well, I don't want to accept things the way they are, so I am ready to make a change. All funds gained from this endeavor will be put toward muscle wasting research. Muscle wasting caused by Cystinosis is complicated, but I believe there are answers if we seek them! A friend of mine, who is only a few years older than I am, has been told he needs a feeding tube, due to muscle wasting in his esophageal muscles. This is NOT OKAY. I want to create some massive change in our community and the quality of life for those of us living and thriving with the illness. Because we are such a small population, fundraisers like this are the only way we will discover new treatments and help people with Cystinosis live bigger and better lives. If you would prefer to donate through another avenue besides the causes page you can also contribute through Paypal right HERE

I thank you from the bottom of my heart for your generosity! 

So, I guess you could say, I am a girl who enjoys the little things; dancing in the kitchen with my little family of three, sour patch kids, sidewalk chalk in November, movies that inspire you to throw all caution to the wind and chase your passions, toddler laughter wafting through the air, a really comfortable pair of sweat pants, a delicious bag of salt & vinegar potato chips, and the noise and chaos of a life created on dreams and wishes. A momma to a little ball of light who will fight tooth and nail to be here on earth with her while she is growing up, no matter what odds we have stacked up against us!



A giant thank you to Gentri for letting me share my story about this crazy, bittersweet, gut wrenching, beautiful ride called life!


-Tahnie

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Now, if you have a second please go visit Tahnie and her blog. :) Her outlook on life is beautiful and she truly is a Happy Girl!

15 comments

... said...

wow. what an inspiring little family. i honestly feel ashamed for ever NOT choosing joy because i know i am so blessed. thanks for sharing gentri!

love,
mrs. dtf

stephanie said...

wow. wow. wow. i'm in tears. what an amazing women!

Amira said...

Oh wow, what a truly inspiring story! She has an amazing outlook on life! Going to visit her page now :-)

jessica said...

This is such a beautiful and inspiring story. It's amazing to see people going through tough times that are able to have such a positive look on life. Awsome Blog of the Week pick!

Samantha said...

Wow, what an inspiration this little family is. Thank you so much for sharing your story, Tahnie!

Gentri, I love that you chose her as blogger of the week!

World Tour Stories said...

how beautiful

Taru from World Tour Stories - two lovers sailing around the world

JRuud said...

Cute little mama. So inspirational.

Gaby said...

wow, what an inspiring and touching story. x

Shane said...

Such a touching story and beautiful little girl :) Thanks for sharing this new blog.

xo Shane

Morgan said...

how inspiring. they're both so beautiful!

The Bookness said...

Haha, the little girl is too cute =)

Answer: I use a lot of levels on photoshop. Make them a little lighter than the original is. And voila its good looking. =)

Thanks for the kind words.

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Lynn {hearted girl} said...

i've visited Tahnie's space and read her story. it's amazingly touching and heartbreaking. she is one strong girl and so is Sookie!!! choosing joy, we all need to infuse this mantra into our cells more. wonderful guest post, completely inspiring. ♥

write in tights said...

Aww, you guys are precious, precious! Momma is the number one job out of many.
XO

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