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Wednesday, December 12, 2012

This is Zoe’s story (21 Photos)

Before Zoe Lush was even born, there were signs of big trouble. Zoe's mother, Chelsea, got the news at her three month ultrasound. When the perinatologist gently pressed the wand down on Chelsea's belly, Zoe's soft skull curiously molded from a circle to an oval shape under the pressure of the wand. A closer look revealed further damage. Zoe's femur was in two separate pieces and many of Zoe's ribs were in multiple stages of fracture. Zoe's bones were already breaking in the womb. The concerned doctor looked up at Chelsea, "Mrs. Lush, there's something very wrong with your child."

Months later Zoe entered into the world broken. She fractured her collarbone during the birth, and within Zoe's first 30 days of life she broke both of her ams and her leg, and then her right arm again. Zoe Lush was diagnosed with Osteogenesis Imperfecta, commonly known as Brittle Bone disorder.

When we hear about Brittle Bone, we often think of somebody who is slightly more prone to breaking a bone than the average person - that would be type I OI. Type I is the Brittle Bone most people are vaguely familiar with. People with Type I don't produce sufficient collagen to grow strong bones. However, most will grow to natural height with normal looking bones that are slightly more fragile than yours and mine.

But there are other, more menacing types of OI.

Zoe has Type III, the most severe type of OI you can possibly survive. OI is a form of dwarfism. Arms and legs are often deformed from both the irregular, under-mineralized bone structure as well as repeat fractures. Many children born with Type III fracture their ribs simply from taking a deep breath. Some infants will pass away from respiratory failure, especially early in life. If a child with Type III does survive those first, formidable months, they will never grow much past 3 feet tall, and will likely spend most of their lives in a wheelchair.

At 3 months, Zoe was breaking so often Chelsea had resorted to splinting Zoe herself because doctors were so unfamiliar with the condition. Often times doctors handle OI children like regular kids, causing even more breaks.

Zoe also has brittle teeth, eating anything but soft food can cause chipping. Zoe's ear bones are just as fragile as any other bone she has. Loud, piercing noises can shatter her eardrums.

Perhaps one of the most important facts about OI is that it does NOT cause mental delays. At a glance, many people see Zoe's physical deformities and conclude that she's also mentally handicapped. Zoe does have difficulty speaking, and often favors sign language instead. During one of Zoe's trips to theCHIVE offices, she accidentally pushed her juice glass to the floor exclaiming, "Oh… poo!"

Zoe has remarkable parents. Curtis Lush just received his degree as a surgical tech from CNI College. Until last week, Curtis would attend classes from 7am - 3pm, then rush to Hoag Hospital where he works as an Operating Room Assistant until Midnight.

Chelsea takes care of Zoe full-time but dreams of returning to school to complete her nursing degree. To assuage Zoe's massive medical bills, the family is living with Zoe's grandparents. Both Curtis and Chelsea are determined to create a better life for themselves and their new family. Chelsea recently found out she's pregnant with her second child.

How we can help:

To strengthen and reinforce her bones, Zoe will need rodding surgeries. Metal rods can be surgically inserted in the long bones to stabilize and strengthen them. Zoe's soft bones will be drilled in 3 sections where expandable, telescoping rods will be inserted. With these rodding surgeries, it's possible that Zoe's legs could support enough weight to walk someday. Zoe needs at least 6 bones rodded, and the surgeries aren't cheap.

Zoe's wheelchair is outdated, some parts are held together with duct tape. The analog chair severely limits Zoe's mobility and, in turn, her ability to discover the world around her. With kids, curiosity is the root of speech. If Zoe cannot wheel over to the object that intrigues her, she'll never learn its name. Zoe needs a tricked-out set of wheels, and we're going to get that for her along with a badly-needed wheelchair ramp at her home. The entire list of Zoe's needs here.

Spread the word:

Because there is so little information available on OI, many kids with Brittle Bone go undiagnosed. As a result, it's common for young children with OI to be taken from their homes by child services. Once that happens, the parents must prove their child has OI. The OI testing process can take months. Meanwhile, the children languish under the improper care of foster providers ignorant to the child's specialized needs, often causing more physical pain to compound the obvious mental anguish.

Let the healing begin:

Zoe is as aware of the world around her as you and I. She feels her bones shatter the same as you and I would, only more often. Throughout her childhood Zoe will travel to strange places and have metal rods wedged into her delicate frame. The collective pain Zoe will endure in her life will make any of our toils seem insignificant. But the space between the hurt is filled with smiles. As you'll see below, Zoe never stops smiling. Together, we can dramatically improve Zoe's quality of life. With the Chivers' help today, we can ease Zoe's pain.

This is the first official Chive Charities campaign. Years in the making, Chive Charities exists for Chivers to champion the orphaned causes of the world. It is the charity for the underdogs. Chive Charities will change the giving paradigm. All of the money raised will go directly to the individual in need. Chive Charities will not faulter under the yolk of excessive overhead or fritter our money away on lavish executive salaries. Leo and I will never take a paycheck from Chive Charites.

Zoe faces a lifetime of travel and medical costs, not to mention badly-needed living enhancement. I'm setting the goal at $100,000, our most ambitious goal yet. LOST Co-Creator Damon Lindelof, host of the video below, is starting with a whopping $5,000 donation and challenged theCHIVE to match it. Done! $10,000 is already on its way for Zoe. The rest is up to you, Chivers. Let's do this.

Click here to explore the new Chive Charities website and CLICK HERE to donate to Zoe.

Chive Charities Twitter Machine.
Chive Charities Facebook Page.

UPDATE #1: We've surpassed $20,000 in the first half hour!

UPDATE #2: $30,000

UPDATE #3: We just surged past $50,000!

UPDATE #4: $60,000. Zoe and her family, including grandparents, are here in theCHIVE offices today. They cannot believe what they are seeing. They've told me to thank theCHIVE Community from the bottom of their hearts.

UPDATE #5: $70,000

UPDATE #6: $95,000. The final push!

UPDATE #7: $100,000 in six hours!!! This is nothing short of amazing. This was an effort made by thousands of individuals contributing everything from $50 to the change in their couches. Each one of you should be so proud of yourself right now, you've changed a little girl's life forever.

The Zoe campaign is closed but theCHIVE Fund remains open, we'll fill you in further on that juggernaut tomorrow but feel free to kick the tires on this amazing new tool to help those in need. Continue donating RIGHT HERE.

For those of us who contribute to these campaigns, we aspire to make the world 10% happier. We are the 10%’ers. Welcome to Chive Charities. This was your idea, Chivers. It was born out of theCHIVE communities’ escalating aspirations to help more individuals in need, and to do so in a fashion nobody has ever seen. Donate RIGHT HERE.

Zoe and Chelsea are with us now in theCHIVE office. We’ll keep you posted on the totals as they come in. Check out the amazing video below. We’d especially like to thank LOST Co-Creator Damon Lindelof for orchestrating the interview, he’s a stand-up guy and a good friend.

UPDATE #4: $60,000. Zoe and her family, including grandparents, are here in theCHIVE offices today. They cannot believe what they are seeing. They’ve told me to thank theCHIVE Community from the bottom of their hearts.

UPDATE #6: $95,000. The final push!

UPDATE #7: $100,000 in six hours!!! This is nothing short of amazing. This was an effort made by thousands of individuals contributing everything from $50 to the change in their couches. Each one of you should be so proud of yourself right now, you’ve changed a little girl’s life forever.

The Zoe campaign is closed but theCHIVE Fund remains open, we’ll fill you in further on that juggernaut tomorrow but feel free to kick the tires on this amazing new tool to help those in need. Continue donating RIGHT HERE.


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