Gentry Family's Story
“To many, hemophilia is just another word. To others, it’s a lifelong journey of obstacles,” said Kaylean, who is a stay-at-home mom to three children: Liam (4), Annabelle (3) and Barrett (1). Both boys have Moderate Hemophilia B (Factor 9 deficient).
Kaylean’s grandpa, grandpa’s brother and her little brother all have hemophilia, which helped prepare her for this long journey, she said. “But when the doctor tells you, ‘your boys have hemophilia,’ the whole game changes.” So far Liam has had a handful of infusions, and Barrett had his first infusions at the end of 2015, Kaylean said. “The struggle comes into play when we go play with other children at parks, play centers, pools and school. Yes, we have obvious limitations, but we want them to know, even with having a bleeding disorder we are very fortunate because of the advancements the bleeding community has achieved.”
Kaylean’s grandpa helped start the Nebraska Chapter of the National Hemophilia Foundation (NHF), so Kaylean has been involved with the NHF for many years. But she and her husband, Brandon, became even more active after their son Liam was born. “We attend many of the events and educational opportunities made available to us. By attending the different events, we keep up on the latest information, meet many families and can share experiences. But furthermore, we can educate ourselves and all of our friends and family,” Kaylean said.