Olivia's Story

On May 11, 2004 Olivia Cook was born with a rare kidney disorder called ARPKD (Autosomal Recessive Polycystic Kidney Disorder). As a true testament to her strength and tenacity, she didn’t die like most children born with this disease. She grew, she lived and in ways, she thrived. But at 18 months the signs began pointing to complications in health, and that’s when Kimberly and Bruce discovered that their beloved toddler had a rare and terminal kidney disorder.

ARPKD attacks the kidneys, filling them with cysts. Fighting to continue their duties (i.e. filter toxins out of the body), Liv's kidneys had to grow larger to try to do their job as they simultaneously fought the cysts. Olivia’s kidneys are about the size of a large adult males.

When you meet her, the first thing you notice might be the sparkle in her eyes, the glow of her cheeks, or the infectious ring of her laugh! But hug her, and you’ll feel her distended belly. A round “Buddah belly” imbalances her tiny frame. Her organs are fighting for room to grow.

Because the kidneys, liver and spleen all work so closely together, and because they are so important, yet dysfunctional per this disease, they are the largest in Liv’s belly. Her stomach is the smallest. We lovingly refer to her as a “baby bird eater.” Tiny nibbles are all her body can digest at a time, so her doctors added a feeding tube into her stomach. Each night Olivia is hooked up to a machine that administers slow drip nutrition to help her body grow.

Other ramifications of this dysfunctional process include weekly injections of growth hormones, daily injections of vitamins and minerals to keep her body balanced for growth, and monthly blood draws to check for possible change in kidney function.

The short story is- this child has dealt with more in five years than most of us could even imagine dealing with in our lifetime. Breathe deep. It gets worse before it gets better.

Liv’s dad Bruce, a healthy athlete and loving father was the first natural consideration for kidney donation/transplant.…unfortunately, while fighting for his daughter's life, he was found to have two forms of rare terminal cancer. The Cook family have spent the last 3 years fighting for survival of two lives in one household. Bruce has undergone chemo treatments, blood cell transfusions and is currently in, still fighting. Bruce is holding tight to Hope with both hands. In the meantime, Olivia's mother Kimberly asked doctors if she could be considered as a donor; overweight and overstressed, the doctors informed Kimberly that she couldn't be considered for the procedure until she made her own health a priority in her life. A sick child, a sick husband, a full time job as the Branch Manager at WECU, Kimberly Cook stepped up to the challenge.

(As a side note, if you haven’t met this woman, make sure you do. She is the embodiment of all things good, strong, graceful and gorgeous. Kimberly Cook is love, an angel walking among us!). Kimberly lost a significant amount of weight to be considered for a possible donor candidate for her daughter Olivia.

And that’s where our story turns a corner; it’s also the part where you come in.

Kimberly’s commitment to her daughter and her health brought her to Thrive Community Fitness in Ferndale—where I am one of her fitness trainers. Kim struck me as dedicated, kind, generous and compassionate but we never spoke more than a few kind words in passing: feedback, encouragement, acknowledgment and goodnight.

Late November, before a class, I met Olivia in the childrens' play room. This gorgeous, blue-eyed angel sitting on my co-workers lap stole my heart from the moment I first met her. Something about this child is powerful beyond belief! When I saw Kimberly that night I felt like I was sharing the world’s best secret when I said “I met your daughter Olivia. She is extraordinary!"

Less than a month later, my sister was in a near-fatal car accident, rendered hopeful only after hours of commitment via jaws-of-life and a life-flight helicopter ride to the ICU in Syracuse.

That night at the gym I told my class, “This is why we work out. For moments like this …when the world crashes down upon us and we don’t know what else to do, we have a place to put our sorrow and to find our healing. And if, God forbid, we’re ever on the other side, our bodies will heal and recover more quickly that medically imagined!”

Kimberly came to me that night and shared her story.

Through her smiles and dedication to fitness, she’d been working through years of grief, worry, guilt and pain. She’d been fighting for her daughter's life with every pound she lost; the very next day she was scheduled at UW medical center to test to see if she was a match to donate a kidney to her daughter Olivia.

I wish I could tell you what it’s like—to want to save someone who feels like your own skin, and to not know if your body, some unknown, yet totally intimate, entity will deny or support you. It is a heartbeat of hope that pulses in your skin with every breath. You know what you want. You know what you came for… but it’s absolutely clear that it’s completely out of your hands.

I can’t even begin to imagine what it felt like to stand in Kimberly’s shoes that night, sharing her worst fears and biggest dreams with someone she barely knew.

But Kimberly is brave, perhaps more brave, courageous and stoic than anyone I’ve every met! She tells her story with immaculate clarity. There’s no plea for pity or remorse, just quite simply the telling of truth, of loss and love and forever.

It’s more heartbreaking than anything I’ve ever heard: her mother, her daughter, her husband, her world.

That wasn’t the day I decided to donate my kidney, but it was the day the seed was planted, the spark to my fire that took only moments to smolder into a flame.

I’m thankful that Kimberly can’t donate. I’m thankful beyond words! I can’t imagine a whole household under the knife, a whole family partial to pain, medications, surgery and struggle.

I’m thankful that somewhere in my heart, my spirit did more than whisper. It Shouted: It’s YOU! This is your time!

It took a couple weeks for Kimberly’s tests to come back, for me to research the long-term effects of a kidney donation upon my body- my future. But really, it took one phone call.

When I learned that Olivia’s blood type is A+, I tracked down my American Red Cross (ARC) blood-type records from halfway across the country. It’s one of the moments I’ll remember for the rest of my life… where I was sitting, the intonation in ARC caseworker Susan’s voice: Your blood type is A+.”

A million Christmases at once!

An explosion of joy inside my chest!

A feeling that—if I could capture, bottle and contain it—I’d be a millionaire overnight!

It was beyond happiness. Even beyond joy. It was Purpose! That’s when I knew… this is my kidney to give so that Olivia Cook could live.

And that’s when the LivLife part of this story began. The kidney is small change compared to the potential we all have together. If a stranger can meet a child and voluntarily undergo a surgeons knife to save a life, what could a hundred of us do together? One thousand? …all the dreamers in this nation?

Welcome to the Liv Life Campaign!

You came at the right time! This story is about to get Amazing!

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Lets Talk About COTA and why LivLife will Last Forever

Liv Life is a lifetime campaign... it will Live and Thrive the way the American Red Cross, United Way, and YMCA have done. 2010 is the beginning of Something Great in Bellingham, Wash. This is the birth of a campaign that will help families all across the nation for years to come!

Seeing our vision, and acknowledging the scope of our dreams, the LivLife team is completely committed to making this a sustainable, highly professional campaign. We are building a strong foundation that will support us for years to come.That is how we found the Children's Organ Transplant Association (COTA).

In the world of fundraising, grassroots movements are potent but sometimes limited. AtLivLife, we Create Without Limits. We also Create with a grasp on reality, and the reality is that there is a ton of Red Tape around running a non-profit. Someone has to constantly monitor cash flow and report to the IRS with organized clarity and consistency; there is also a very real duty of maintaining donor trust and finance allotment. My personal opinion is that red tape doesn't belong at the dreamers' table It's important; it's valuable; and it's not what I envision us to be doing with our time.

That's why we found COTA.

COTA is a national, first class non-profit organization that helps campaigns like ours. They handle all the red tape. They make sure all the money is used responsibly (for transplant-related expenses ONLY; they don't even take a cut), they organize all the pieces and are in constant communication with the IRS to run an above-board fundraising campaign.

They are our saviors! :)

COTA not only handles all the paperwork that makes our head spin, they also have an endless supply of resources for us to use.

What this means to us and the people we play with:

We operate with a non-profit status. All donations are tax deductible.

There are many reasons to give, and many ways for us to give back. Some companies give because they just want to help; others may also want their logo displayed to show they've offered support; some may also want the tax break. We can work with all of them on many many levels.

We also have company matching options and sponsorship opportunities for organizations, corporations, and individuals who'd like to get involved in a big way. Send them in my direction, or directly to our website: www.COTAforOliviaRC.com

 

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This is it! WELCOME to the Liv Life Campaign!
This is the part where things start to get interesting. This is where you get to Stretch Your Wings, Dream Even Bigger and Create Without Limits!

Here is goes: Liv Life Today!

How Do We Do It? Constant vigilance, lots of heart and very little sleep :)

There are a lot of ways to run fundraisers, to lead, to work and to learn. LivLife is one heck of a learning curve as well as an incredible practice of all the best parts of life we’ve learned so far.

But here’s the long story short… back in January, four of us sat together at a table in Ferndale and discussed possible fundraising ideas and a video to get Liv's story out. Look how far we’ve come!

Now our organization is much like a Bullseye: Those of us at the center are like a heartbeat drumming constantly to the pulse of this vision. We eat, sleep and breathe LivLife, and we have been doing so for months. As the rings expand, you meet angels who step in and out with different gifts and time frames. EVERYONE is vital to meeting our vision, and all parts are dynamic… there is always room for moving around within. Deep in the pulse of LivLife you’ll find:

Jenn Day is our Public Relations Coordinator, in charge of all media contacts, interviews, press releases and general head of “getting the news out”. She adds fairy dust to all things good and real. Need a touch of lightening and brightening? Want to get pass the word about LivLife? call Jenn: (360) 303-2632

Mia Phillips is our Assistant Community Coordinator. She knows everything that going on, all the time, and makes sure that nothing gets dropped. Mia is my essential right hand SuperWoman; can’t get ahold of me and need an answer now? call Mia: (360) 319-6825

I am Danica Kilander, the Community Coordinator. I’m in charge of holding the vision, making sure we’re staying on course, reaching farther, and working within the parameters of our overhead organization: COTA (see COTA e-mail for specifics). Almost all the details fall on my plate first; you want glitter in the facepaint, or an extra tarp for the stage? You interested in becoming a corporate sponsor? Call me and we’ll see what we can do: (360) 393-9133

The three of us have been working together for months… call any of us if you need a vision reminder or have a question. We all have individual titles, but could slide easily into each other’s positions.

Timothy Lucas is our webmaster. He runs Olivia’s website and happens to also be one of the most talented designers we’ve ever worked with. He designed our logo, our postcards, our posters, letterhead and Liv’s Story. If we have a vision for expansion, Tim helps us get there. Wondering how to make your vision a reality? Send Timothy a request at: bushwhackgraphics@yahoo.com or call him at (541) 975-4401

The team is expanding and growing everyday. Angels like you are stepping in to lend a hand; You Are Vital! You are our voice and vision. Please share your greatest talents and gifts with us; please grow and give with us. Everything about your presence in this campaign is a blessing. Thank you for your help!

Every campaign has a Culture; Here is Ours:

This is a: We Get To, We Want To, We Love To kind of campaign.

This is a campaign of Hope and Possibility.

We are Ambassadors.

We offer Opportunities to Give… not obligations. We offer Chances and Choices without pressure or manipulation; we are great at telling Liv’s Story so that people will want to listen and will feel what we felt when we first heard it. We Plant Seeds and Trust they will Grow.
That is why:

• We Thank every person who listens to our story. Whether or not they decide to give, they are a part of this story now, –a sounding board to help us practice; a part of the process we do not foresee and cannot foretell, an unknown entity. We trust that most people are good; we make space for them; we allow time to process.
• We Share the LivLife story with Love. We Smile. We Express our needs and ask for help. And we say Thank You with a grateful heart for whatever happens next.
• We Tell the Truth. This is a story of Humanity- yours and mine. There’s no need to embellish, hesitate or expand. The Simple Truth will do. This could be our daughter, our sister, ourselves… Each and every one of us need this help; we need to Give, Love and Share. We tell the truth because it’s more potent than any story we could create.

In less than five months everything has changed. The world has a tingling sensation, a zip, a sparkle. My journal entry on May 1, 2010 reads:

I live in a different world these days.

Anything is possible.

There are no limits! There are no doubts! There just isn't time for doubting/fearful nonsense anymore. There are challenges and Solutions. The questions How? and What else? arise constantly now that I know my Why?

Why?

Because we can.

Because we’re meant to.

Because we were Born to.

Because This Is Our Legacy! Together.”

On May 1, I was also trying to explain why it would benefit a company to Activate with LivLife…because This is the Beginning! We are at the ground level of Something New and Alive!
Right now, there are a few hundred people who have heard of LivLife, but in years to come, this will be The Giving Circle of the Northwest… our chance to spread our wings to spread compassionate empowerment!

Lillith Fair, Lalapalooza, Disney World… all started somewhere, somewhere just like this.

A reminder:

This is a campaign of Hope and Possibility. We are the ambassadors. We offer Opportunities to Give—not obligations; please take a moment to let that sink in. We offer an Opportunity to Give. A question with a simple yes or no answer that will Change Your Life, and maybe someone else’s. LivLife is the chance of a lifetime, and you are on the ground level!
THINGS WE CAN DO RIGHT NOW:

• Log in and sign the guest book: Let Olivia know you care! Create your user login and try to pass a note every few days if you can.
• Facebook Blast- tell Everyone about May 22: LivFest at the Village Green in Fairhaven. From 10:30-9:00
• Call a friend, invite them to LivFest (LivFest is a full day music and entertainment festival. It's FREE and going to be Absolutely Magical!)
• Ask the questions: who do I know? Get on the phone. Ask them to help.
• Not in Bellingham? Start a campaign in your hometown- or just challenge your friends. Collect your coffee money for one week and make a donation. You and nine friends could collect $350 or more in the blink of an eye.
• Ask your employer to start a corporate matching program. Every donation you make will be double by their match--instantly. You and your friends just donated $700 instead of $350!!! WOW!

We also have IMMEDIATE needs:

• Donations for the drawings at LivFest. Anyone and everyone can give. Collect whatever you can. We'll make a package and raffle it off. Every bit helps. (P.S. If you collect a donation, please give them my card AND get about 50 of their business cards in a zip-lock baggie. We want to display their cards at the festival. The Circle of Giving is about shouting out the Great Companies that have helped Liv along the way!)
• Posters are Ready Got a free minute to hit the streets? We want them Everywhere!
• Companies to Sponsor T-shirts/banners: we need a cash donation to buy T-shirts so we can sell them at LivFest. How can you help? Know someone who really wants to donate $100? We are a non-profit, you know. Every donation is tax deductible.

Also, to plant a seed, we also have a LivLife Wish List:

• Winery to Sponsor Next Event
• Companies to offer matching
• Corporate Sponsorship

Our needs list is building fast and furious. Keep an eye open. If you don't want to receive these messages, shoot back a message; it is never our intention to be bother.

Just as a reminder: there are a lot of ways to run fundraisers, to lead, to work and to learn. LivLife is One Massive Learning Curve as well as an incredible practice of all the Best Parts of Life that we’ve learned so far. Having said that, I would like to be extra clear: We are a living, pulsing organization, constantly growing with all the gains and pains that come with life.

Please, please, please, ask questions if anything is unclear. Please offer feedback. Please share your ideas.

Please trust your heart.

Please help us grow and learn and give.

And please have patience while we process your ideas of growth.There is an incredible balance between sharing our vision while not overloading; between acting in the here-and-now, and keeping our long-term goals in check. And there is certainly a balance between resources and energy and the “best” ways to spend them.

There are so many options. Help us choose the best ones. And please trust that we are choosing the right ones.

OK. I'll be waiting for your call! 360-393-9133. What is your spirit telling you to do?

From the bottom of our hearts, Thank You for taking time to find out more!

Yours truly,

Danica Kilander
LivLife Community Coordinator
360-393-9133

 

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