Welcome To Voices of HFGF
HFGF has so many stories to share. Stories of our patients, medical community, staff, and so much more. We’ve decided to collect these stories and share them with you so you can see the very special community that HFGF has fostered here in the state of Florida, a community of endurance, support, and hope. Please share our stories and thank you for listening.
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.
Before officially retiring three years ago this June as a hemophilia nurse coordinator at Nemours Children’s 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 diagnosis 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.
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.
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 18-year-old University of North Florida (UNF) freshman with an eye on the medical field was 14 before she was finally 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 take the high road, hit the books and learn all he could about hemophilia in order to educate those same friends about what he was going through. Pretty impressive for a kid.
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 short-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 prodded and poked 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 each fall to Sponsor and manage the 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 Houvouras Family
As a baby, the undiagnosed Preston, now a junior at Cocoa Beach Jr./Sr. High School, 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’s Step Therapy Story
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 diagnosis before it will cover doctor-subscribed therapy. Diagnosed at age 12 with type one Von Willebrand and 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.
Leanne Buchanan, HFGF Outreach & Education Nurse
Florida native Leanne Buchanan joined the ranks of the HFGF as 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.