Women are often the frontline defense forces in hemophilia at home. Not only do they carry the child and give birth to him or her, but they must learn about hemophilia, ensure their child gets good treatment, learn how to infuse, worry endlessly and love eternally… I know, as I have been there too!
In honor of Mother’s Day we’re sharing this article from PEN (February 2018), which highlights some amazing moms! Happy Mother’s Day to all the amazing mothers of children with bleeding disorders, and any chronic conditions! I hope you receive the special treatment this day you so deserve.
by Jess O’Donnell
From personal to professional, the women profiled here turned their connections to hemophilia into real, life-changing achievements. While many of us set out to complete a task, we may not label it as a goal or plot out a deliberate path to achieve it. But each of these women had a vision, implemented a plan, and plotted a path to reach her goal.
Each woman’s strategy was unique, but all the goals had something in common: they were all SMART goals. SMART goals are specific, measurable, accountable, realistic, and time-bound. Learn how Mischante, Angelie, Darlene, and Christy and Elise worked hard to get results.
A Better Future for Her Family
After Mischante Cortez’s son, Adam, was diagnosed with hemophilia in 2006, Mischante decided to set a goal: to become a registered nurse to better advocate for Adam’s healthcare needs. It wasn’t easy. Pregnant at age 16, Mischante had dropped out of high school. So before starting her nursing program, she needed to obtain a GED and enroll in community college. After receiving her GED and being accepted into a nursing program, Mischante divided her goal into smaller, specific steps.But her path wasn’t without obstacles. While enrolled in the nursing program, Mischante was often left with no choice but to bring her three young children to school with her because she lacked childcare.
Despite the setbacks, Mischante persevered. “I continued to strive toward my goal to be a nurse while raising three kids alone and working full-time as a certified nurse’s assistant [CNA]. In May 2010, I graduated from college with my nursing degree. It was the best decision I ever made for my family.” Today, Mischante supports her family as a working nurse and single mother. “I am Adam’s number-one advocate, and I get to heal people for a living. I am so grateful that Adam’s diagnosis of hemophilia was exactly what I needed to get into gear.”
A Son’s Diagnosis Prompts a Family Goal
When Angelie Garcia’s son Zayden was diagnosed with hemophilia, Angelie recognized that he was unhappy while being infused with factor. So she told her husband, “Once we’re taught by home nurses, within two weeks we will start involving Zayden.” Then Angelie set a goal to have Zayden take an active role in the infusion process within one year. Angelie and her husband divided their goal into small, attainable steps: the first was to make sure Zayden wouldn’t be afraid of infusions.
On their path to achieving their goal, the family’s largest setback was their location. “Our hometown hospitals need education on hemophilia,” explains Angelie. “I’m the only one here that can infuse my son, and it terrifies me because they don’t know about his condition and we are three hours away from our HTC [hemophilia treatment center].” Angelie learned very quickly that she had to be Zayden’s primary advocate for his hemophilia care. Teaching him to help in the infusion process empowered Zayden, now four years old, to be more aware of his condition. His proud mom says, “He is learning about his condition and will tell you what he can and can’t do.”
Lobbying for Specialized Emergency Treatment
Darlene Shelton founded Danny’s Dose Alliance after her ten-month-old grandson was diagnosed with hemophilia. Although Danny always had his factor with him wherever he went, Darlene’s family learned that paramedics and ER workers were not allowed to administer the factor due to conflicting treatment protocols and liability fears. So Darlene sprang to action and formed Danny’s Dose with these goals in mind: (1) Raise awareness about the current gap in emergency treatment for people with rare diseases, chronic illnesses, and special medical needs; and see current protocols amended. (2) Assist with specialized education for EMS and ER personnel. (3) Provide education for affected families on how to better advocate for their treatment needs.
The organization’s first goal was to amend protocols in the Sheltons’ home state of Missouri within two years. Darlene says, “Goals can be lofty, but I believe if you don’t set goals high, it removes some of the urgency.” After their proposed legislation was passed in Missouri, Darlene looked forward to their next goal. “We passed EMS legislation, assisted with the beginning of paramedic education, and are helping that grow in 2018 and beyond. Of course, we can’t be sure we will meet our five-year goal, but it looks promising, and we are determined to push hard.” Darlene hopes to have improved treatment protocols for ER and EMS in place across the entire US within five years of their first state, Missouri.The work of Danny’s Dose doesn’t just benefit people with hemophilia. “It benefits all individuals with special medical needs,” says Darlene, “covering rare disease and chronic illness. This covers those with rare, lifesaving meds, those with particular treatments based on their illness, and those with complex medical devices like trachs and heart-pumps.”
Never Too Early to Start!
It’s never too early to start teaching our children the importance of setting goals and achieving them. Christy VanBibber’s eight-year-old daughter Elise was disappointed by her neighborhood’s lack of knowledge and awareness of hemophilia. When Elise began sharing the news about her baby brother Timothy, who has hemophilia, she realized that many people didn’t know what hemophilia was. “She came home with a real concern,” Christy notes, “and asked, ‘Mom, why does nobody know what hemophilia is?’”
Elise made it her goal to generate awareness in her community about hemophilia—by making and selling beaded bracelets and then donating all proceeds to the Southwestern Ohio
Christy recounts the initial success: “She made some bracelets and asked me to put them on Facebook. We decided to sell them for $3 each. Immediately she sold ten!” Elise went on to sell her bracelets at two local farmers’ markets and local football games.
Christy was thrilled. “She raised $880! Also, people recognize Elise and Timothy at school and the grocery store, asking questions and praising her for such a great job. We are really proud of her!”
All these women—and one young girl—achieved their goals fueled by close-to-home, real-life concerns, and you can too! If you want to learn how you can reach your goals this year, check out our cover story and find out how to make your goals SMART.