Lenore and her family have been a part of the Unite for Bleeding Disorders Walk since 2009, and this year, she’s excited to walk alongside her husband, David, and their two sons. Lenore walks in honor of their youngest son, who was diagnosed with Hemophilia A in 2003 at just 16 months old. The diagnosis came as a complete surprise to Lenore and David, as there was no known family history of a bleeding disorder, and their older son does not have one.

At first, she noticed lots of lumps and bruises on her son when he was just learning how to walk. Lenore recalls telling her husband she didn’t remember their oldest son having this many bruises, but thought she just couldn’t remember, as the two boys were three and half years apart. At one of his doctor appointments, Lenore voiced her concerns over the bruises, and the doctor asked if she was doing a good job watching him and taking care of him. She was shocked at this question, and left feeling like she just had to be a little more careful.

On New Year’s Day of 2003, Lenore and her family were at her mom’s house, and her youngest son accidentally fell and hit his mouth off a soft, upholstered chair. He tore his frenulum, and Lenore recalls it only bleeding a little bit.

“We drove home from my mom’s, gave him a bath, and put him to bed, and he woke up at 2 in the morning, crying, and my husband went in to check on him,” Lenore said. “I heard him say, ‘Oh my god!’ I went in and his whole bed was covered in blood. It looked like a crime scene! I thought that was really odd. Gave him another bath, changed his sheets, went back in at 6 am, and it was just like that.”

When Lenore called the doctor, they said not to worry. “They said when blood is mixed with salvia, it’s going to look worse than it is,” Lenore added.

Her son continued to bleed for more than 24 hours.

“It was actually our babysitter that encouraged me to call, because I didn’t want to make fuss, but our babysitter said, ‘No. You need to take him in as he is.’ My son was wearing a bib, and it was covered in blood,” she said. “The babysitter said, ‘Don’t change him, take him like that, and I bet they’ll see you.’ And they did, they saw us right away. They sent us to Children’s Hospital. We took him in on January 2nd and he was diagnosed on January 16th.”

After receiving the diagnosis, Lenore did what many parents do when faced with life-changing news and turned to the internet. With a dial-up internet connection and a million questions racing through her mind, she began researching everything she could about Hemophilia. Overwhelmed and uncertain, she worried about how her family would manage and what the future might look like for her son living with a bleeding disorder. Luckily, she remembered the information the hospital gave her about the Hemophilia Center of Western Pennsylvania (HCWP).

“The treatment center was a lifeline in the darkness,” she said.

The HCWP helped her family navigate her son’s new diagnosis and connected them with the Western Pennsylvania Bleeding Disorders Foundation (WPBDF). “The New Parent Network events were so helpful to just learn more, because I had so many questions. It really helped to talk to other parents and have the opportunity to talk with the hematologist and nurses,” Lenore said. “You and your child need support, emotional support, too. They could be experiencing things that maybe their friends aren’t. Here, you don’t have to explain what a bleeding disorder is. You’re in good company and they understand you.”

Lenore’s favorite part of the Unite for Bleeding Disorders Walk is hanging out with other members of the community, and being able to talk, all while buzzing with excitement in anticipation of walking together. “My husband started running in the 5K. He does the run first, and it’s exciting to see it grow, and all the support and cheering for the runners.  I find it to be a really fun morning! It feels like one big family.”

Funds raised through the Unite for Bleeding Disorders Walk stay 100% local, directly supporting individuals and families across Western Pennsylvania affected by bleeding disorders. Your support helps ensure that vital programs like the New Parent Network, which meant so much to Lenore and her family, continue to make a lasting impact.

The New Parent Network is a collaborative initiative between WPBDF and the HCWP, offering support to families from the time of their child’s diagnosis through age seven. Through a series of educational and social events tailored specifically to families with young children, the program empowers parents with knowledge and connects them with a community of others who truly understand their journey.

“How could we miss the walk?! It’s so fun and is such a great thing to do. Last year, my husband called it, Our Little Walk. I would love to see it grow bigger and bigger, it’s just a great thing and all the people that put it together are amazing,” Lenore said. “Any chance we have to reach out to the broader community and help them understand what it’s like to live with a bleeding disorder is incredibly valuable.”

Support families for years to come by joining us for the Unite for Bleeding Disorders Walk on Saturday, September 6! Join us for a morning of music, fun, and community as we raise awareness, and funds, for the bleeding disorders community! Register yourself or your team today at: http://uniteforbleedingdisorders.org/event/wpa