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 little; together 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.

THANK YOU.

love & light to you all.

xo.

LIFE IS FOR LIVING.