Caring is in Our Blood
Henry Reif began his journey at Rady Children’s Hospital-San Diego in 2010, when he had a tonsillectomy. His surgery went well, but his doctor gave the standard warning: Although bleeding is rare with this procedure, occurring in less than one percent of all cases, if it does occur, Henry must be checked immediately. Six days later, Henry calmly walked down the hallway of his home and said to his mother, Tracy, “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. Three weeks later, a battery of tests revealed that Henry had a very rare condition, one that would completely change his life.
Henry was diagnosed with hemophilia B, also known as factor IX deficiency, as it is caused by a lack of blood clotting factor IX. Henry is one of only 3,300 people in the U.S. diagnosed with hemophilia B, which translates into about one in 30,000 live male births.
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. Henry’s family keeps three doses of factor IX available at all times, and each dose costs $5,000. “It’s super expensive, so I wish it was cheaper for kids that don’t have insurance or can’t afford the co-pay,” Henry says. This high cost of care prompted Henry and his family to launch Henry’s Fund, a donor-advised fund at Rady Children’s for patients with hemophilia and other blood disorders.
In just 18 months, Henry and his family have raised more than $450,000. These much-needed funds will help pay for family support and education, as well as a hemophilia research fellow.
How did they do it? Henry has led two Walk teams for the Shamu & You Family Walk, raising nearly $90,000 through donations from family and friends, and participated in the 2011 Holiday of Miracles Radiothon as one of the featured Adopt-A-Families. The entire family also partnered with the Rancho Santa Fe Auxiliary Unit for its 16th Annual Fundraising Gala to support the Peckham Center for Cancer and Blood Disorders.
Despite some of his medical setbacks, Henry and his family see his hemophilia as a journey, one that has brought their family, friends and community closer together. “Mostly, it has taught our entire family not to take anything in life for granted,” Tracy says.