A Day of Fun and Friendship for a Young PI Patient and a Special Visitor
来自新泽西州的五岁埃兹拉从未上过学校或经历过大多数孩子认为理所当然的事情。
他具有X连锁的CD40配体缺乏症，这是原发性免疫缺陷或PI的一种罕见形式。PI包括200多种不同的疾病，是由遗传性或遗传缺陷引起的，其中人体免疫系统的一部分缺失或无法正常发挥作用。1Proper 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.
坚定的朋友的支持
但是，由于他两岁，“最好的朋友”的喜悦在整个医疗挑战中都帮助他安慰了他。以斯拉爱他的Igi娃娃，他称之为“ Ivig”。Igi娃娃是治疗性游戏套件的一部分，可以通过Baxter的Myigsource患者支持计划获得。这个可爱的豪华娃娃带有书籍和一套逼真的医疗设备，旨在帮助Pi及其家人应对医疗环境，并表达他们对他们正在发生的事情的感觉。伊维格（Ivig）一直是以斯拉（Ezra）的坚定伴侣，帮助他应对充满医疗任命和程序的日子。
年轻患者对IGI娃娃的积极反应促使巴克斯特创造了一个真人大小的大IGI，他在免疫缺陷基金会（IDF）双年展会议上露面。尽管埃兹拉（Ezra）梦想着会见大IGI，但他的医疗状况使他无法参加会议。
实现梦想成真
克里斯汀·史密斯（Kristin Smith）在担任Myigsource患者倡导者的角色中了解了Ezra和他对IGI娃娃的热爱，并与Baxter和Dayna Fladhammer分享了他的故事，Baxter和Dayna Fladhammer是Myigsource患者的倡导者和治疗性游戏工具包的共同创造者。他们决定，如果以斯拉无法进入Big Igi，他们将把大IGI带到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.
去年春天，Big Igi终于朝Ezra的家漫步，进入了他最大的粉丝的怀抱。
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.
他的妈妈罗宾说：“对我们来说，埃兹拉拥抱大Igi的那一刻就是一切。”“以斯拉已经学会了要谨慎地接近他不确定的任何事物，但是有了Big Igi，Ezra可能会不受限制。”
"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."
与他人分享经验
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.
克里斯汀说：“我喜欢以斯拉的大型IGI访问是如何表明一个小男孩能够产生的影响以及医疗保健公司如何对其所服务的人如此深刻地关心。”“我们知道那里还有很多其他孩子可以从一次大型IGI访问中受益，我们希望让其他人有机会体验以斯拉的喜悦。”
Click here to get a glimpse of this special day.https://www.youtube.com/watch?v=IRAjLTtBJFs。
Go tobigigivisit.com输入您的机会见面大IGI。
To learn more about the Therapeutic Play Kit and other resources available to patients, caregivers or families impacted by PI, visitMyIgSource.com。
1. Immune Deficiency Foundation. "About Primary Immunodeficiencies."http://primaryimmune.org/about-primary-immundeciencies/。2014年9月5日访问。
