On September 28, 2010, Tony and Mollie welcomed their little boy, Graysen, into the world. The next day he was diagnosed with severe Hemophilia B when he didn’t stop bleeding after his circumcision.
His first bleeding incident at home happened when Graysen was two months old. He got a soft tissue bleed in his cheek when a nurse pressed too hard to give him an oral shot. They took him to the emergency room so they could access a vein and infuse his missing clotting factor 9.
After his first bleed, they connected with the Nebraska Chapter of the National Hemophilia Foundation. Mollie said, “We met so many amazing people that knew exactly what we were going through. Seeing other little boys with hemophilia run around and play was so reassuring. For the first time, I thought things might be okay for Graysen and that he would live a pretty normal life.”
Graysen now has a port, so that Tony and Mollie can give him infusions at home. They do them three times a week and as needed if he has an injury. Mollie said, “Hemophilia has been a wild ride, but our family has survived and we have met so many amazing people along the way. Without the support from our family and the Nebraska Chapter, I’m not sure where we would be today.”
For more information on hemophilia or the Nebraska Chapter, please visit www.nebraskanhf.org.
Henson Family’s Story
When you have a child with a bleeding disorder, life can get crazy. Add a second child with a bleeding disorder, and it can be pretty daunting.
This is the journey the Henson family from Lincoln, NE is on with their two young sons, Hayden and Max, both of whom have severe hemophilia. Parents Dan and Kristin are both very involved in the care of their children. Hayden receives infusions every other day through a port in his side. Max has also had a port placed in his side like his big brother.
Kristin had experienced Hemophilia even before her children were born. Her father had hemophilia. She remembers the struggles he encountered with the disorder. She shared, “At first, the hardest part of raising a child with the same disorder was feeling scared of everything. I saw my father live with this when I was little, and it was hard for me. I realize now that so much has changed since then, and our sons will get to do many of the things their friends do. I truly believe that you aren’t given more than you are able to handle, and we are blessed to have two beautiful, healthy little boys.”
The family is actively involved with the Nebraska Chapter of the National Hemophilia Foundation. They take advantage of the educational programs offered and have a great support system of family and friends.
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.