Welcome to Voices of HFGF
The Hemophilia Foundation of Greater Florida strives to foster a community of endurance, support, and hope for patients, medical staff, their families, and beyond. Here are some of their stories:
Dawn & Patrick Solomon
When Dawn and Patrick Solomon moved to the Orlando area close to 20 years ago, they already had a son with hemophilia and a daughter who was a carrier.
Mendy & Nathan Hood
Sometimes when you least expect it, an incident occurs in your life that couldn’t be more timely for the situation.
The Tuttle Family
Aaron Tuttle goes through cycles when it comes to being accepting of his infusions. At times, he wonders aloud, “Why do I have to do this? Why do I have to be different than other people?” Then, other times, he is totally amenable to the treatments and his lot in life.
Javier Aguilu grew up in Puerto Rico at a time when treatment for hemophiliacs was scarce. The 58-year-old Casselberry resident inherited his condition from his mother.
Before officially retiring as a hemophilia nurse coordinator at Nemours Childrens’ Clinic in Jacksonville, Missy Zipple served for 38 years as a health care provider, educator and friend to a countless number of grateful children throughout the state affected by hemophilia.
Nicki Salopek & Carter Fahrubel
Nicki Salopek and her husband Bart Fahrubel were a bit surprised by the diagnoses of their son, four-year-old Carter Fahrubel. There is no record or evidence that hemophilia has ever been a part of their family.
Like many baby boomers diagnosed with hemophilia as an infant, the road to survival was not an easy one for Joe Riggs. Prior to present-day long-lasting factor VIII and a true understanding of the disease, people like Joe had to struggle through much of their young lives in order to stay alive.
Tony has been helping patients get through the tough times by using his firsthand knowledge as a fellow hemophiliac who has seen his share of ups and downs.
Kim Lamb & Sheekeria Hargrave
When the bleeding disorders community is within the four walls of the home in which you grew up, you tend to know a bit more about the condition than most people. It can be a blessing and frustrating at the same time.
Natalie Rubin is fresh off her first week at Camp Boggy Creek as a leader in training, working with young cancer patients.
Samantha and Tyler Nazario
Tyler was born in New York City, as was his mom Samantha, who says bleeding disorders were regularly undiagnosed in the borough’s Hispanic communities. She recalls bringing Tyler to the hospital because of bruising on his spinal cord, knowing something was amiss.
A Hemophilia Foundation of Greater Florida scholarship recipient with aspirations to become a pediatric physician, Andrew Farren is pumped about what lies ahead as he enters his second year at St. Petersburg College.
The Wyrick Family
Alex Wyrick already knows what he wants to do with his life. The ten-year-old native Floridian has his mind set on becoming a chef.
The 18-year-old University of North Florida freshman with an eye on the medical field was 14 when she was diagnosed with von Willebrand’s disease at John Hopkins All Children’s Hospital in St. Pete.
The Wei Family
Wendy Wei and her family have been involved with the Hemophilia Foundation of Greater Florida for almost as long as they have been living in the United States. Wendy and her husband Eugene emigrated from China in 2005 to Gainesville, and soon thereafter welcomed two sons, both diagnosed at birth with Hemophilia A. Wendy was aware she was a carrier; bleeding disorders are present on her mother’s side of the family.
Brett Palaschak realized at an early age that playing contact sports with his friends was not in the cards, so he decided to hit the books and learn all he could about hemophilia in order to educate those same friends about what he was going through.
The Gonzalez Family
Brandyn and Nicole Gonzalez knew very little about bleeding disorders, much less that there was a community of those dealing with such disorders. After being married less than two years, the Wesley Chapel couple welcomed their first child nine months ago.
Cody and Marlene Horne
Cody Horne just wants to play soccer. The seven-year-old son of Marlene is so set on that goal that he asked the doctor for her permission on a recent wellness visit. While he did get the go-ahead he was seeking, his mom is not so sure.
Twenty-three-year-old Jonathan Lebron thanks his parents for his optimistic outlook on life, regardless of being diagnosed with Severe Hemophilia A when he was less than a year old.
Coleman Safi tells it like it is. At just 12 years old, the Jacksonville seventh grader is not shy about relating his life story. Whether it’s recalling the good times or the not-so-memorable ones, Coleman loves to share his thoughts.
Few things are as gut-wrenching as watching your baby being poked and prodded while you stand by helpless to stop the tears. Chris Carson and Alicia Norris know these haunting emotions all too well. Their second son, Noah, who just turned a year old, was late in being diagnosed with Hemophilia, causing an array of fact-finding hospital visits.
Brian and Rhonda McDonald
For the past 23 years, Brian and Rhonda McDonald – founders of the Hemophilia Foundation of Greater Florida – have dedicated teach fall to sponsor and manage HFGF’s Flight for Tomorrow Invitational Golf Tournament, a fundraiser that has netted more than $2 million for the foundation.
Joseph Burke has been on quite a journey since being diagnosed at birth with Severe Hemophilia A 40 years ago. But through it all, he remains positive, not allowing a bleeding disorder to control his life.
The Hovouras Family
As a baby, the undiagnosed Preston almost lost his life from a nosebleed in 2007. At first, doctors believed surgery would cure his nose bleeds, but that was unsuccessful. A pediatrician then informed Andrew and Rayna that in the absence of trauma, their son was showing signs of three ailments: Leukemia, a brain tumor, or a bleeding disorder. He was tested for all three.
Natalie Rubin has first-hand knowledge of step therapy, the controversial treatment plan designed to save insurance companies money. Also known as “fail first” protocols, the patient is required to “fail” on an insurer-preferred drug therapy based on a similar diagnoses before it will cover doctor-subscribed therapy. Diagnosed at age 12 with Type I Von Willebrand and is a patient of Ehlers Danlos syndrome, a connective tissue disorder that brings with it illness on a regular basis, Natalie is now speaking out against the therapy.
Florida native Leanne Buchanan joined the ranks of HFGF as an Outreach and Education Nurse last August and hit the ground running. New to working with the disease but with a 30-year career behind her as a practicing nurse, Leanne is thrilled with the chance to help the bleeding disorders community.
The most surprising thing about having a bleeding disorder for 21-year-old HFGF volunteer Alexis Wade is the challenge of managing it. “Sometimes,” Alexis says, “no matter how hard I plan, I cannot do what I want to. However, over time, I have learned that life just requires some flexibility.” She adds that “Acceptance comes easier when you smile, revise your plan of action, and keep moving forward.”