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Children Our Everything
Children. Our Everything. is published quarterly by the CHOC Children's Foundation. It features stories about patients, donors, board members and community involvement; and news about guilds, events, Children's Miracle Network and hospital updates. It is mailed to donors who support CHOC with a gift of $50 or more.

Sisters with Rare Immune Disorders are Grateful for CHOC Children's

When Cris Kyriakidis woke up one morning in 2000, it was a day like any other—until she entered her 2-year-old daughter Lauren’s bedroom. Cris found Lauren lying in blood-soaked sheets, her little body covered in bruises.

“It looked like Lauren had been thrown out of a window, or severely beaten,” Cris recalls, evoking the painful images associated with that horrific moment.

Frightened and confused, Cris and her husband Otto called their family pediatrician, Dr. Michael Shannon, who immediately cleared his schedule to see Lauren. As soon as he took one look at Lauren, he personally walked her down to the lab for blood work and made arrangements for Lauren to be admitted to CHOC Children’s at Mission Hospital.

 

“There is no textbook case for her cure or treatments.”

There, the staff performed additional blood tests and discovered Lauren’s platelet count was almost non-existent. A normal platelet count is 150,000–400,000 per cubic millimeter of blood; Lauren’s was only 4,000.

Lauren was diagnosed with Idiopathic Thrombo-cytopenic Purpura (ITP), a condition marked by a low platelet count of no known cause. An ITP patient with an extremely low count such as Lauren’s is vulnerable to major bruising and internal bleeding, as might be experienced in a motor vehicle crash.

Lauren was admitted to the Hematology Unit at CHOC to receive immunoglobulin infusions to fortify her platelet count. “When we saw all of the other sick children at CHOC, we were confronted with the fact that this could be our reality. At that moment, we truly appreciated the fragility of life,” Otto remembers.

Then, another catastrophe hit the family. After receiving an infusion, Lauren had an allergic reaction and went into shock. “One percent of the patient population is allergic to the treatment Lauren received; unfortunately, she was among that one percent,” Otto explains.

Lauren was successfully treated for her severe allergic reaction and continued to be cared for at CHOC. Her doctors suspected there was more going on with Lauren’s immune system than ITP, and they worked diligently to identify the root cause of her symptoms.

After performing a battery of tests on Lauren, CHOC hematology expert Dr. Diane Nugent determined that Lauren was suffering from Common Variable Immune Deficiency (CVID), a severe immune disorder that was decimating Lauren’s platelet count.

The disorder also was affecting her lungs; pulmonary nodules had developed on Lauren’s lung tissue. Left untreated, they would cause scarring that could lead to suffocation.

A successful treatment plan for Lauren would be anything but easy. “Lauren’s medical condition is extremely rare,” Otto explains. “There is no textbook case for her cure or treatments.”

“The CHOC team spent endless hours and days researching a medicine to slow down Lauren’s lung disease and boost her platelet count,” Cris recalls. “Thinking outside of the box, Dr. Nugent discovered a similar case study in Switzerland and immediately dispensed the infusion therapy for Lauren—it worked like a charm. Everything that CHOC has done for Lauren is through incredible research and experimentation.”

Although it was extraordinarily difficult coping with Lauren’s life-threatening disease, Cris and Otto had to remain strong for their healthy daughter Stacie, who was two years older than Lauren.

That all changed three years ago when Stacie found a lump in her neck. “Once again, our lives changed forever,” Cris says.

A biopsy performed at CHOC revealed Stacie had Castleman’s disease, a very rare autoimmune disorder characterized by overactive immune cells that develop in the lymph nodes.

“We went back to Dr. Nugent, but this time for Stacie,” Otto explains. “Now both girls were being treated concurrently for different immune disorders. At one point, they even shared a room at CHOC.”

Today Lauren is 11; she enjoys singing, playing the guitar, watching American Idol and having family days. She is admitted to CHOC every three weeks for life-saving infusion therapy that she will need for the rest of her life.

Stacie is 13 and a budding entrepreneur who enjoys playing the piano and spending time with animals. According to Cris, “she is the brains behind all the CHOC fundraisers she and her sister have participated in. She started a dog grooming business, a specialty cupcake business and a homemade chocolate business to raise money for CHOC.”

Both girls have also raised thousands of dollars for CHOC through the annual CHOC Walk in the Park presented by Disneyland® Resort. They have been chosen to co-chair the event in 2009.

“As you can imagine, without CHOC, we would not have the incredible experiences, memories and family we are so blessed with today,” Cris says. “We are so grateful for everyone at CHOC; they gave us our daughters’ lives back.”

CHOC CHILDREN'S PUBLICATIONS
PHYSICIAN CONNECTION ENEWSLETTER
KIDS HEALTH MAGAZINE
ANNUAL REPORT
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Children's Hospital of Orange County is affiliated with UC Irvine Healthcare and UC Irvine School of Medicine

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