On March 3, the Rancho Santa Fe Unit of Rady Children’s Hospital Auxiliary will proudly host its 16th annual fundraising gala and provide sponsors and attendees with an evening of fabulous cuisine, amazing silent and live auctions, the comedy of Dennis Miller, and dancing until midnight — all in support of Rady Children’s Hospital, Peckham Center for Cancer and Blood Disorders!
The gala committee draws its inspiration and title sponsorship from 9-year-old Henry Reif and his parents, Tracy and 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 1 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. “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.”
Join Henry in support of the Rady Children’s Hospital and the Peckham Center! Tickets are now on sale. Rady Children’s Hospital Auxiliary is a 501(c)(3) non-profit organization and event tickets are tax deduction eligible. Reserve yours now at www.rcha-rsf.org or by calling 858-414-6296. Find them on Facebook at www.facebook.com