26 January 2012

imagine (my life with cystinosis)

Some of you know that I had a kidney transplant when I was 11 years old, due to kidney failure as a complication of Cystinosis.

Some of you know that Cystinosis is a relentless disease, as it attacks every cell and organ in the body.

Some of you know that is is rare. A rare disease is one classified in the fact it affects less than 200,000 in the United States. There are about 500 people living with Cystinosis right now in the United States. Yes, five hundred.

Some of you know that cystine crystals, when built up in the body, result in cell destruction and death.


Imagine being 28 and losing the ability to eat solid foods. Imagine facing stress with every meal, wondering if you are going to choke on your food.

Imagine being 28 and losing your voice. Imagine wanting to record yourself reading a book to your daughter, so that she will remember what you sounded like.

Imagine being 28 and losing muscle in your hands, having friends with this same disease who can no longer do something as simple and as pleasurable as snapping their fingers, or holding their phone, due to such severe muscle wasting in their hands.

Imagine taking medication every 6 hours. Yes, even during the night. Imagine this medication is known to cause ulcers in lab mice, extreme exhaustion, headaches, numerous GI problems, leaving you to push through a heavy fog throughout the majority of your day. You just reach the tip of that iceberg of starting to feel somewhat clearheaded, and it is time to take it again. You must take it willingly, because it is the only chance you have at slowing down your disease.

Imagine spending 2 hours of your day, EVERY DAY, doing exercises for your esophageal and hand muscles. To preserve what muscles you have. Willing your body to fight, fight, fight. To hang on. To thrive.

Imagine being required to put eyedrops in every hour you are awake, to diminish the crystals in your eyes so you won't go blind.

Imagine being thrown the harsh reality, that at a mere 28 years old, you must dig deep within yourself to unearth coping mechanisms to handle growing old gracefully, all before your 30th birthday.

Imagine you are the momma to a healthy, vibrant, little ball of energy who has such fervent zest for life, she makes you want to LIVE bigger & better every single day. She inspires you to fight tooth & nail. She opens your eyes to the notion that if you refuse to accept she will grow up without you, you could just be crazy enough to start a ripple of fundraising and awareness that will CHANGE that.

my friends, LIVING with cystinosis
CRN famly and medical conference
july 2011 San Francisco
photo courtesy of sarah dawson photography

We are here. We may be small in population, but oh we are mighty. We are brave. we are fighters. We forge ahead through dark days and up against tremendous odds. We are courageous. And we need your help. 

Anger can be a good emotion. It can be a great one. I've done too much crying over lack of research in terms of muscle wasting and Cystinosis. The time has come to take action. If you aren't part of the solution, you are part of the problem, yes?

In honor of Sookie's 2nd birthday next Wednesday, I have created a wish through the causes organization. You can click through right HERE to donate to the Cystinosis Research Network. I've made a goal of $2,000. We can do this. This is attainable friends! All of these funds are being dedicated for muscle wasting research. This is a crucial need right now and although difficult to face, is a GOOD problem to have because we adults now are living long enough to be facing this somewhat new challenge of the disease. We are living longer, but there is still so much work to be done in terms of research. We do not receive any government grants for research because of the rarity of the disease. (about 1 in 250,000 live births)

Sookie thanks you. She loves her momma. She wants her momma to be here for every one of her birthdays, to provide kisses, hugs, encouragement, laughter.

Alone we can do so littletogether we can do so much
Helen Keller


A quick edit: Although these are my health challenges and at times I wonder if I am strong enough to face it all, I am BLESSED BEYOND ALL REASON that I get to live this life. I LOVE my life. I have already lived three times as long as I was supposed to, I have a gorgeous little pint sized ball of sunshine who is 1 of about 10 in the world and I get to do life with the most incredible, kind hearted, guy ever. He rubs my feet when people are trying to get an IV in me and they are failing miserably.

If you prefer to donate through another avenue besides the causes page you can do so HERE through a secure link through PayPal. Just mention Sookie's birthday or Sookie! :)

Checks can also be sent to: 
Cystinosis Research Network

302 Whytegate Court
Lake Forest, IL 60045 USA
Checks should be made payable to the "Cystinosis Research Network".
Remember that The Cystinosis Research Network is a tax-exempt organizations granted "501(c)(3)" non-profit status by the I.R.S., The CRN Federal tax id # is 043323789. All Contributions are Tax-Deductible.

love & light to you all.



  1. Tahnie, you are incredible. This brought tears to my eyes thinking of your sweet daughter and your fight to see her grow up. I am so sorry that you have to live with such a terrible disease. I want to help any way I can. I will do my best to spread the word and help you raise the money you need for research!

    1. Megan, you are a gem. Thank you, thank you sweet gir!!!


  2. You are such a strong inspiring Momma! Thank you for sharing your heart!

    The Foley Fam Blog

    1. Kristine, you are too kind. Thank you for reading!


  3. Replies
    1. Thank you Jamie!

      Happy Weekend to you. & hugs back!

  4. Wow, so very very touching. I would love to promote this cause through my blog!

    xo Shane

    1. What a sweetheart you are Shane! I would be honored if you would like to write a post about this and share it on your blog. Let me know what you need from me or how I can help! tahnie@gmail.com


  5. Thank you for sharing your story. I suffer with Crohns disease, which is horrible in its own way. Between the disease itself and all of the lovely medication with side effects often times worse than the disease, there are days I can't get out of bed. I have a one year old and two year old so you can imagine how hard it is. I'm currently awaiting my first surgery to remove parts of my intestines, but your story has reminded me that things could be much worse for me. I will pray for you and the other individuals that are suffering with your illness. I wish I could help financially, but being unemployed and sick myself money is tight for my little family.

    1. Katie, I am so sorry you battle Crohns disease. There are so many awful illnesses out there. I truly wish I had endless money to throw at research because we need to cure everything. I apologize if this post came across as me whining or saying I suffer, I'm a big believer in rhetoric and I aim to tell myself even though there are many challenges, I am a fighter and I am LIVING with this disease, thriving against the odds. I will pray for you, your health, your upcoming surgery and your sweet family. Please let me know if I can do anything to help you!

      Love & light to you!

    2. It didn't come across as whining, and even if it did, I think we're entitled to whine every now and again. All we can do is continue to fight these diseases. I wish you much strength.

  6. i LOVE your baby girl. she is so so cute.


  7. Thank you for sharing. My 5 year-old daughter was recently diagnosed with Charcot-Marie Tooth disease, which is also a progressive disease, but really only affects peripheral parts of the body - from the knee down, from the elbow down, neck...stuff like that, and she is facing 2 hip surgeries in April, as well as at least 2 months in a half-body cast. My son (her twin) also likely has the disease, though we haven't had him tested. They both have about the same physical capabilities as my 2 1/2 year old - some things they don't do even as well as she does, and they're twice her age. I was telling my husband last night that I just feel overwhelmed and like I can't handle it all. And that others have it so much worse, and I don't get how they do it. Thank you for the reminder to look at the good in life. Your bravery is absolutely inspirational. Keep fighting.

  8. I rarely reply to Tahnie's blog because she seems to answer in a more beautiful way than I can ever achieve however I feel I must now!!!!! Dear Crazy Life!!!! You are alright. My husband and two of my 4 children have CMT. My 4th child has Cystinosis. I have decided we are a genetic cesspool! However...we are so happy and alive. We live life to the absolute fullest every second. I have some very good insite to CMT. A doctor told my husband when he was diagnosed that "If you have to have something this is what you want. It will not kill you and it will not effect your mind". My husband is brilliant and a terrific dad and husband...he is also the treasurer of the Cystinosis Research Network. My kids are athletic and very smart as well as quite cute! We live a very normal life. Get involved with your local MDA. You will learn from the experts! Katie(klarimore112@sc.rr.com)

  9. Wow. You're such an inspiration! And so brave. I pray that you will be able to raise the money and that the researchers will be able to figure something out. Your beautiful little girl needs you. Keep the fight up.

  10. Truly, truly inspirational. Your little girl is so beautiful and I hope that you have all the time in the world with her :)

    Say x

  11. I'm so thankful I found your blog! I had never heard of Cystinosis, which just proves the need for your blog and what you wrote here. I will spread the word, pray for you and all those affected and def be giving what I can to help. Thank you for writing this. You are a beautiful and courageous woman, thank you for humbling me and reminding me to be thankful for every breath.

    btw- your daughter is so ADORABLE!!!

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