In May 2013 I had the pleasure of attending my very first Rendez-vous – which welcomed delegates from across the country into my own backyard of Winnipeg, Manitoba. As a volunteer it was a great opportunity for me to attend the medical symposium and learn more about inherited bleeding disorders and the current progress in research. In addition, the weekend event was a wonderful way to connect, share ideas and be inspired by other volunteers across Canada who are doing great things in their chapters and regions.
Jen Ruklic (L) and Sheri Spady (R)
The medical symposium really opened my eyes to the great work being done in hemophilia research including the enormous strides that gene therapy will bring for members in our community. This research is being done in part thanks to grassroots volunteers making a difference in big ways in their local communities by raising money for hemophilia research through donations to the Hemophilia Research Million Dollar Club (HRMDC).
Two of those volunteers are Alberta’s own Jen Ruklic and Sheri Spady. These busy women, mothers and region co-chairs are using their families’ experiences with hemophilia and the support they have received from the bleeding disorder community as momentum to give back to the community that helped them through tough times by developing local awareness and fundraising campaigns.
Let me tell you a little more about both of them. Jen Ruklic’s journey with hemophilia began when her son, Carter Stephan Ruklic, was born on June 12, 2008. The labour was challenging as Jen lost a lot of blood. It took a really long time for the doctors to stop the bleeding, but she thought nothing of it. Everything went smoothly after that. A month later Carter was circumcised and when Jen arrived home she went to change Carter’s diaper, only to find an entire diaper filled with blood. They rushed back to the hospital. After five hours and endless blood tests their son was first diagnosed with moderate hemophilia but were later told the lab had made a mistake and Carter really had severe hemophilia A. Jen realized that her family’s life had changed forever. She, her husband Will and daughter Cassie were in complete shock. She remembers that during the first visit to the hemophilia treatment centre she was handed a giant binder filled with scary things: joint bleeds, muscle bleeds, spontaneous bleeds and the list goes on. She was given a bag for the binder and she felt like they had just received a prize for being the 100th customer.
Once home she put the binder and bag under her bed because, as a child, that is where the monsters are. She spent the next six months in a state of depression. Results from her tests also came back revealing that her factor levels were low. They also had Carter retested. Denial… Six months went by and Jen didn’t want to talk about it or really acknowledge it until Carter had his first bleed. He rolled over on a toy and bruised his back in the area where the kidney is found. She started to cry, then all of a sudden stopped, looked at Carter, smiled and said, “Mom’s got you.” She ran to her bedroom and got the binder from under the bed. The monster was looking at her in the face and she needed to help her son. So she took a deep breath and did what she had to – admit that her son had hemophilia.
After that day she hit the ground running. She engulfed herself with information, she attended the Society events and even went to a women’s weekend for others with bleeding disorders.
Today Carter is five years old and their lives have changed so much. Her son is an amazing normal little boy. He wears a helmet at times and knee pads. She has learned to infuse at home, no port. She finds the vein three times out of five. She joined the board for the Southern Alberta Chapter of the CHS. She claims that she and her husband are not anything special but they love their kids. And Carter is no exception.
In order to raise awareness about inherited bleeding disorders she created Carter’s Quest for a Cure. She installed an awareness, table with materials from the CHS, at a local Walmart in Airdrie in 2010. This led to fundraising efforts as she felt there was a need for her to continue helping people understand the lives of those with hemophilia. With the help of her husband Will and daughter Cassie, the family raises funds for research to help Carter and other kids just like him. They do a fabulous job! From online auctions and donations, Mall in the Hall events, bottle drives, firewood sales, to garage sales and raffle. Just recently she hosted a successful fundraiser called Colour me Red, where local politicians and community members dyed their hair red in support of the cause.
Sheri Spady, is Jack Spady’s mother. Jack was born on May 25, 2007 and was diagnosed with severe hemophilia A when he was 13 months old when he got a scrape on his baby toe. It bled for approximately five and a half hours before she and her husband Jason were able to get it to stop and that was only after putting really firm pressure on the toe for twenty-five minutes. Jack always had dark, raised bruises, but they thought it came from learning to walk on a hardwood floor and trying to keep up with his two older siblings, Jaden and Ashley. They thought maybe he was low on a vitamin or something. Within a couple of weeks of being diagnosed he was scheduled to have surgery; a port-a-cath was inserted into his chest. It was a life saver but at the same time caused them a few problems.
Sometimes it was very scary for them. The rubber on the port could break down so Sheri and Jason had to learn to give each other needles to train themselves to give infusions. They needed to get into the veins. It took Sheri two weeks of trying to infuse Jack before she finally succeeded. In nine treatment days, he ended up with twentytwo needle pokes in both his arms and his port because she kept missing. He was such a trooper – he laid very still and there were very few tears. They are so proud of how brave he is. When Jack was four years old he had surgery to have the port removed. Now they give him his medication through his veins. Some days are good and they get it right away; some days are not and it takes them three different pokes to get it in. Occasionally they hit a nerve which causes him to holler in pain and they have to remove it and start all over again. Through it all, Jack tells them it is okay. With recent breakthroughs of longer lasting medication they too believe it will be okay.
Once he is old enough, he will be taught to self-infuse. The CHS has camps across the country where nurses teach boys to self-infuse and have fun with other kids who share the same problems.
Sheri decided to come up with a fundraising initiative after taking Jack to preschool and having to explain what hemophilia was all about. Most had never heard about this disorder. She was not aware of any fundraising events going on in her community at that time and decided to create her Our Plot to Clot campaign with the goal of developing a fundraiser, not only to raise money but also to increase knowledge of inherited bleeding disorders. This dinner event provides an evening of information, entertainment, silent auction, amazing prizes and much more!
These two special women are acquiring needed funds for research while focusing on community awareness and education on inherited bleeding disorders. They have raised close to $85,000 dollars between the two of them for the HRMDC. And everyone is having a blast participating in their initiatives! Thank you Sheri and Jen for your outstanding commitment and enthusiasm!
Now you can see why I couldn’t help but be inspired by these two volunteers, their positive attitudes and endless dedication to motivating increased awareness and support. At Rendez-vous 2013, they were able to reinvigorate their sense of purpose. As they continue to work on their local fundraising initiatives, Jen and Sheri are also looking to the future for bigger and better fundraising initiatives for our national community and a way to continue the fight for a world without pain and suffering and with the best possible care for people with inherited bleeding disorders.
To learn more about Carter’s Quest for a Cure and Our Plot to Clot, visit the Web sites: www.cartersquest.com and www.ourplottoclot.org.
Take the opportunity today to join in the great work being done across the country to raise money for research. Contact your local chapter or the national office for help getting started.
The cure is near, and volunteers like you will make it happen.
- August 2013