A Day of Fun and Friendship for a Young PI Patient and a Special Visitor
Five-year-old Ezra from New Jersey has never attended school or experienced many things most children take for granted.
He has X-linked CD40 ligand deficiency, which is a rare form of primary immunodeficiency or PI. PI encompasses over 200 different disorders and is caused by hereditary or genetic defects in which part of the body’s immune system is missing or fails to properly function.1 Proper treatment of PI requires regular medical care, including frequent needle sticks, which can be frightening for children. In Ezra’s case, his serious condition and two stem cell transplants mean that he must stay in isolation in his own home to protect his health.
Support from a Steadfast Friend
However, since he was two years old, the joy of a "best friend" has helped comfort him throughout his medical challenges. Ezra loves his IGI doll, who he calls "Ivig." The IGI doll is part of the Therapeutic Play Kit, which is available through Baxter’s MyIgSource Patient Support Program. This cute, plush doll comes with books and a set of realistic-looking medical equipment designed to help children with PI and their families cope with the medical environment and express their feelings about what is happening to them. Ivig has been a steadfast companion to Ezra, helping him cope with days filled with medical appointments and procedures.
The positive reaction that young patients have had toward the IGI doll prompted Baxter to create a life-sized Big IGI, who makes appearances at Immune Deficiency Foundation (IDF) biennial conferences. While Ezra had dreamed of meeting Big IGI, his medical condition made it impossible for him to attend the conference.
Making a Dream Come True
In her role as a MyIgSource Patient Advocate, Kristin Smith learned about Ezra and his love for his IGI doll and shared his story with Baxter and Dayna Fladhammer, a MyIgSource Patient Advocate and co-creator of the Therapeutic Play Kit. They decided that if Ezra could not come to Big IGI, they would bring Big IGI to Ezra.
"When we learned Ezra’s story we knew we had to make this meeting happen. It was simply the right thing to do. Many of us are also parents and we knew how much this mattered," said Dayna.
Arranging a home meeting was complicated due to Ezra’s medical condition, but the Baxter team worked with Ezra’s parents and physicians to develop a feasible plan that would minimize risk.
"Everyone was happy to do whatever was asked to make this visit a success," said Kristin.
This past spring, Big IGI finally strolled toward Ezra’s home and into the arms of his biggest fan.
A Fun-filled Day
When Ezra saw Big IGI coming up to the front door, he was thrilled. Big IGI and Ezra spent the afternoon playing with toy cars, enjoying a game of tag in the backyard, and sharing something extraordinary for Ezra—a hug.
"For us, the moment when Ezra hugged Big IGI was everything," said his mom, Robin. "Ezra has learned to be cautious about getting close to anything he isn’t certain is safe, but with Big IGI, Ezra could be uninhibited."
"When Ezra was with Big IGI, it was as if they’d known each other forever," continued Ezra’s dad, Evan.
Unbeknownst to Ezra and his family, the person underneath the Big IGI costume was Baxter’s BioTherapeutics Vice President, Blaine Forshage, who eagerly volunteered to make the trip to be part of this special day with Ezra. When asked why Baxter would make such an effort, Blaine succinctly said, "How could we not?"
For Kristin, who accompanied the team to Ezra’s home, the visit was an opportunity to connect with a family whose PI journey was similar to the road she traveled with her son.
"I was there as a Patient Advocate, but I’m also a transplant mom so I know how hard that journey is," she explained. "We made a little boy smile who has had some pretty tough days. It doesn’t get much better than that."
Sharing the Experience with Others
Inspired by Ezra’s joy, Baxter has created the "Big IGI Visit" sweepstakes. The sweepstakes allows patients and/or immediate family members impacted by PI to enter to win the opportunity to spend one-on-one time with Big IGI, in the hopes that the happiness shared between Ezra and Big IGI will continue to ripple through the PI community and help others.
"What I love about Ezra’s Big IGI visit is how it shows the impact one little boy can have and how a healthcare company can care so deeply for those it serves," said Kristin. "We know there are lots of other children out there who could benefit from a Big IGI visit, and we want to give others a chance to experience Ezra’s joy."
Click here to get a glimpse of this special day. https://www.youtube.com/watch?v=IRAjLTtBJFs.
Go to bigigivisit.com to enter for your chance to meet Big IGI.
To learn more about the Therapeutic Play Kit and other resources available to patients, caregivers or families impacted by PI, visit MyIgSource.com.
1. Immune Deficiency Foundation. "About Primary Immunodeficiencies." http://primaryimmune.org/about-primary-immunodeficiencies/. Accessed September 5, 2014.