Jenneffer and Shannon Peterkin were in for the shock of their lives when their son, Aiden, was born and diagnosed with severe Hemophilia A, a rare bleeding disorder characterized by spontaneous and difficult-to-control internal bleeding. With no family history of the disease, they were completely caught off-guard and terrified for their newborn.
Fear was a huge factor in how they initially handled the diagnosis. Doctor-recommended textbooks stoked their fear with pictures of swollen joints and discussions of internal bleeding in the head, neck, and abdomen. They were told that they had to live and remain within an hour’s drive of the hospital, which also affected where they could go on vacation. Due to these restrictions, they were under the impression that Aiden would have to live a sheltered life, unable to participate in sports or other physical activities with his peers. Despite this, the couple was determined to learn more about the condition in hopes of giving their son a more fulfilling life. They found the support they needed at a hemophilia treatment center, where those afflicted not only see a hematologist, but are connected with nurses, social workers, physical therapists, and other specialists who can answer any and all questions. With the support of the treatment center team and local hemophilia chapters, the Peterkins found Aiden could do much more than they initially thought.
“We were happy to learn that with proper precautions and treatments, Aiden would be able to play with his friends and participate in some sports,” explains Jenneffer Peterkin. “We even figured out how to go on fun family vacations.”
Later on, Jenneffer and now 15-year-old daughter Isabella were diagnosed with a milder form of Hemophilia A. Treatments became a huge part of figuring out how to go forward with their lives. While mother and daughter were able to take oral medications whenever necessary, Aiden’s treatment options were far more extensive.
In the past, he would have to administer treatment three times a week, but through the use of Hemlibra, he only needs to inject it himself once a week to prevent bleeding episodes as much as possible. In the event of injury or breakthrough bleeding, he has to infuse clotting factor VIII through an IV.
Today, the whole family is extremely active and spend their days hiking, biking, and working out together. Now 20 years old, Aiden is studying Biology and Chemistry Pre-Med at the Centenary College of Louisiana with hopes to become a hematologist, so he can help patients living with bleeding disorders like himself someday. Both children swim competitively: Aiden at the collegiate level and Isabella for her high school team and swim club.
“We are big believers in educating ourselves and advocating for our kids. Knowledge is power. The local Hemophilia Foundation chapters are where you meet other families and can get emotional and financial support. They usually host numerous educational and fun family events throughout the year,” shares Jenneffer.
Along with being devoted members of multiple chapters of the Hemophilia Foundation, they have also been actively involved with Save One Life. This is an organization that supports Hemophilia communities in underdeveloped countries by providing direct financial assistance and access to medical treatment.
Ultimately, giving themselves permission to live life to the fullest despite their hemophilia diagnosis is what makes the family so inspiring.
“Even though Hemophilia is a serious medical condition, modern medicine makes it possible to live a pretty normal life. We taught both our children to focus on the things that you can do, and stay away from the things you shouldn’t do, like playing football or any other contact sport,” asserts Jenneffer. ■
