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HENRY’S STORY

Our 16th annual gala draws its inspiration and title sponsorship from 9 year old Henry Reif, and his parents, Tracy & Leo Spiegel, founders of Henry’s Fund.  Their journey in support of the Peckham Center began with a relatively simple surgery: 8 year-old Henry Reif was having a tonsillectomy. Surgery went well. Upon being discharged, the doctor gave a standard warning for tonsillectomy patients: although bleeding was rare, occurring in less than one percent of all cases, if it happened to Henry it must be checked immediately. Six days later, Henry calmly walked down the hallway of his home and said to his mother, Tracy Reif-Spiegel, “Mom, I need to show you something.”  Walking into his bathroom, Tracy saw large amounts of blood while Henry continued to cough up even more. Between coughs, Henry calmly stated, “You need to take me to the hospital.” Henry was then rushed to Rady Children’s Hospital. Three weeks later, a battery of tests revealed that Henry had a very rare condition, one that would forever alter the way he lived. Henry had Hemophilia type B.

Hemophilia B, also known as Factor IX deficiency, is a hereditary bleeding disorder caused by a lack of blood clotting Factor IX. Without enough Factor IX, the blood cannot clot properly to control bleeding. Henry is one of only 3,300 people in the U.S. diagnosed with Hemophilia B, which translates to about one in 30,000 live male births. There is little reward for research and drug development and progress in treating the disease has been slow, according to research professionals at UCSD.

Henry and his family have to be cautious and prepared at all times because injuries to the head can be life threatening and injuries to his joints can be permanently debilitating unless Factor IX is administered immediately. Each dose costs $5,000, a prohibitive amount for anyone without good medical insurance. Even with good insurance the co-pay per dose is $450 and when given by infusion provides protection for only 24 hours. Henry’s family keeps three doses of Factor IX available at all times. The medication has a limited refrigerated shelf life of just 18 months. “It would be great to know that I was protected for one week or one month,” said Henry, “it’s also super expensive, so I wish it was cheaper for kids that don’t have insurance or can’t afford the co-pay.” Since his diagnosis, Henry has been to the hospital four times for an infusion. His family has the financial resources to provide for his care, but they worry about others who don’t. “We need to help those who can’t afford their medication; and we want to fund research to work on making the effect of the factor work longer once infused,” said Tracy, who launched Henry’s Fund for just that purpose. “My first husband died of cancer and then Henry was diagnosed with Hemophilia B; and I just had an epiphany that I needed to give back – both with time and resources,” she added.

Living with Hemophilia B also means that Henry misses out on some of the activities he enjoys most: playing football, basketball, soccer and lacrosse. When playing baseball, he’s limited to the mildly safe position of an outfielder. “My disease gets in the way since I can’t skateboard or play most sports, but I deal with it,” said Henry, now 9 years old, “I’m not scared but my mom is!” Despite his setbacks, Henry and Tracy see Hemophilia not just as a disease but also a journey that has brought their family, friends and community closer together. “There is a fine line between keeping him normal and keeping him aware. This is part of his life, but I don’t want to make it his whole life. Mostly it has taught our entire family not to take anything in life for granted.”

US NEWS BEST CHILDREN’S HOSPITALS 2010-2011- August, 2010

U.S. News & World Report announced the results of its comprehensive survey to identify the top children’s hospitals in the country in ten pediatric specialties. Rady Children’s Hospital-San Diego was ranked amongst the nation’s best in five pediatric specialties. With more than 200 children’s hospitals in the United States, the top rankings place Rady Children’s among the nation’s elite. (more…)

TYLER’S STORY

You won’t often hear a family with a child battling leukemia talk about what a “remarkable” experience they’ve had. But 8-year-old Tyler and his family focus on the many bright sides of his life since Tyler was diagnosed with acute lymphoblastic leukemia (ALL). (more…)

DANA CARVEY TO PERFORM AT 15TH ANNUAL FUNDRASING EVENT TO BENEFIT THE PECKHAM CENTER FOR CANCER AND BLOOD DISORDERS AT RADY CHILDREN’S HOSPITAL

Emmy award-winning comedian Dana Carvey, one of Saturday Night Live’s most talented alumni, will bring his brilliant, unrestrained comedic style, wit and personality to The Grand Del Mar, Saturday March 12 for the Rancho Santa Fe Unit of Rady Children’s Hospital Auxiliary fundraising event: Stand Up for Rady Children’s Peckham Center for Cancer and Blood Disorders, an Evening With Dana Carvey. (more…)

STAND UP FOR RADY CHILDREN’S PECKHAM CENTER FOR CANCER AND BLOOD DISORDERS, AN EVENING WITH BILL COSBY

McCain Inc. and the Rancho Santa Fe Unit of Rady Children’s Hospital Auxiliary hosted its 14th annual fundraising gala, Stand Up for Rady Children’s Cancer Care Center, an Evening With Bill Cosby, at the Grand Del Mar on February 27. The evening began with a silent auction, cocktails and (more…)

AUSTIN’S STORY: September 30, 2009

“I don’t like cancer but if I stay strong, take my medicine and think happy thoughts, I will win my battle.” –Austin Gatus, August 2007

In retrospect, Austin’s mother Eva realized there were signs something was wrong, but at the time Austin’s early symptoms — aching muscles, and occasional stomachaches and headaches — seemed inconsequential. But as his family was returning home from vacation Austin started gasping for air so they took him to Rady Children’s. (more…)

14TH ANNUAL FUNDRASIER FEATURING BILL COSBY TO BENEFIT RADY CHILDREN’S HOSPITAL PECKHAM CENTER FOR CANCER AND BLOOD DISORDERS

Bill Cosby, a much-loved comedian and one of the finest positive fatherly role models on television, will bring his legendary and timeless humor to The Grand Del Mar, Saturday February 27 for the Rancho Santa Fe Unit of Rady Children’s Hospital Auxiliary 14th annual fundraiser: Stand Up for Rady Children’s Peckham Center for Cancer and Blood Disorders, an Evening With Bill Cosby. (more…)

STAND UP FOR RADY CHILDREN’S CANCER CENTER, A NIGHT OUT WITH FRANK CALIENDO

The Rancho Santa Fe Unit of Rady Children’s Hospital Auxiliary hosted its 13th annual fundraising gala, Stand Up for Rady Children’s Cancer Care Center, a Night Out With Frank Caliendo, at the Grand Del Mar on February 21st. The evening began with a silent auction, cocktails and stand up food (more…)

Community Supports Stand Up for Rady Children’s Hospital, A Night Out With Frank Caliendo With Auction Donations to Benefit Peckham Center for Cancer and Blood Disorders

Community support has been tremendous for “Stand Up for Rady Children’s Cancer Care Center, a Night Out With Frank Caliendo,” the 13th annual fundraising event hosted by the Rancho Santa Fe Unit of Rady Children’s Hospital Auxiliary at the Grand Del Mar February 21. (more…)

2009 GALA HEADLINER ANNOUNCED: October 15, 2008

The man of a million faces, comedian/ actor/ impressionist Frank Caliendo of Frank TV on TBS and a fixture on the Fox NFL Sunday pre-game show will bring his pocketful of impersonations to the Grand Del Mar, Saturday February 21 for the Rancho Santa Fe Unit of Rady Children’s Hospital Auxiliary fundraising event: Stand Up for Rady Children’s Cancer Care Center, a Night Out With Frank Caliendo. (more…)

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