“Always be a strong
voice for your child”
As parents of a child living with hemophilia, Barbara and Wes have taken on the role of not only parents, but now the advocate, the voice, and the people who might very well save the life of their child.
David was diagnosed with hemophilia at birth during a routine blood test in the hospital, when the injection site wouldn’t stop bleeding. His birth mother was a carrier, but no one else in the family had it. When David was two years old, his aunt, Barbara, and uncle, Wes, adopted him and moved him from California to a rural area in Nevada, and have raised him as their own for the past ten years. The first thing Barbara and Wes did was get connected with the Nevada Chapter of the National Hemophilia Foundation, July 15, 2015 which helped teach her and Wes about the bleeding disorder.
David spent much time at a children’s hospital in California for spontaneous bleeds for the first two years of his life. From age 2 to 8, Barbara was the one infusing him three days a week through a port in his chest. During this time, he was cooperative and had no problem infusing.
Things changed just before his 10th birthday. David had a fever-induced seizure which caused him extreme anxiety, and caused him to be scared of infusions. Barbara said “ he screamed, fought and cried at every infusion. We tried everything over the years, from holding him, talking him through infusions, playing music, candles, breathing techniques, candy, new toys, singing, and so on.” He has improved over the last couple of years, but still yells when Barbara puts the needle in. A lot of this anxiety and fear has to do with David’s autism.
It was during the hospital visit for the seizure where Barbara had to use her voice to advocate for her son and also caught a glimpse at how a smaller hospital in a rural area might not be as educated about hemophilia as they should be. “The nurse did not understand why I was so concerned with infusing him before she was able to get his antibiotic administered and wanted me to stand out of the way until she was completely done with the intake process, like accessing his vein, and putting a catheter in. I had to nicely but firmly tell her, ‘I know what’s best for my son with hemophilia and that is to infuse him and I need to infuse him right now.’ The nurse later apologized.”
Barbara’s advice for parents of a child with hemophilia living in a rural areas is “if they have the opportunity to be connected with NHF-NV ... take advantage of that. They will help you with so much and be there for you.”
Her advice for parents in general?
“Always be a strong voice for your child.”
The Nevada Chapter of the National Hemophilia Foundation offers a number of support groups, including groups for families of newly diagnosed children. For additional information on support groups or any other services and benefits provided by NHF Nevada, please call (702) 564-4368 or email Anne at firstname.lastname@example.org.
The process is easy. Simply fill out the online vehicle donation form on the national website or call 1-855-NHF-4-CAR. Your vehicle (running or not), is picked up free of charge, sold for you, and a portion of the proceeds come directly to the Nevada Chapter of the National Hemophilia Foundation (NHF-NV).
This unique giving opportunity not only helps you clean out your garage but also supports our mission to fund vital research and provide key educational programs and public policy initiatives for people with bleeding disorders.
Help to support comprehensive hemophilia care in the state of Nevada.
Assist with ensuring emergency factor availability in hospitals statewide
Sponsorship of educational programs for consumers and healthcare providers
Sponsor youth ages 7-17 to Hemophilia Summer Camp
Distribution of educational materials Publish informational newsletter
Assist clients with insurance denials and reimbursement problems
Host Consumer Social Events such as picnics and Holiday Parties
Telephone peer support network and youth group
• Improve consumer and healthcare provider education about inherited bleeding disorders
• Promote and support comprehensive hemophilia care in Nevada
• Raise the awareness of bleeding disorders
• Serve as a resource center for distributing educational and informational materials
• Diminish geographic and insurance/reimbursement barriers to receiving adequate care
“To improve the quality of care and life for people with hemophilia, von Willebrand disease and other inherited bleeding disorders, through education, peer support and advocacy.”