Patient Profile: Khai – Healing, Halfway Around the World

October 19, 2012 – When Heather and Aaron Ayris decided to welcome a nine-year old boy with thalassemia into their home for six weeks, they hoped their hospitality would help improve his health. They wanted to show their guest a good time and lift his spirit.

“I’m thankful every day for the response from the Cooley’s Anemia Foundation!”

But it’s the Ayris family whose lives were changed – and it all began in May 2009, as soon as they met nine-year old Khai at the airport in Charlotte, North Carolina.
“I am quite certain that, at that moment in the airport, as I hugged him, he became a part of our family – no words needed,” Heather said.

Khai came to the United States from war-torn Afghanistan through a non-profit organization that organizes medical and dental care for impoverished Afghan children. He was placed with the Ayris family, who had volunteered to host him. Khai had struggled with thalassemia for his entire life, receiving transfusions but no medications. So, within just a few days of his arrival, Heather took him to the doctor – and, right away, discovered the challenges they had to confront together.

“When we were told he had beta thalassemia major, I calmly asked, ‘What is that?’ The doctor told us is was a severe form of anemia,” Heather explained. “While we knew he was anemic, we were about to learn a lot more about a genetic disease that I’d never heard of before.”
“When we were told he had beta thalassemia major, I asked, ‘What is that?’”

And so the Ayris family began racing against time to find out – and do – as much as they could for Khai within the six weeks they had with him. Through numerous doctor visits and dozens of tests, they found out that Khai had severe iron overload – the result of years of transfusions without iron chelation medication.
Help CAF Keep Helping Patients Like Khai. Click Here to Make an Online Donation.

Help CAF Keep Helping Patients Like Khai. Click Here to Make an Online Donation.

“The ferritin count in his blood tests was above 13,000, and there was no telling how high the iron concentration was in his organs,” Heather said. “We knew they were at risk for failure. We contacted Khai’s family in Afghanistan and found out that three of his siblings had died from the illness, including his 13-year-old sister who’d recently died of heart failure.”

With that, a race against time became a struggle to save Khai’s life. When she wasn’t visiting physicians with Khai, working or taking care of her two children – A.J. and Cade – Heather was busy researching ways to quickly get Khai’s iron levels under control. But his six-week stay was fast coming to an end.

Just three days before he was scheduled to depart, Khai’s family in Afghanistan agreed that he should stay longer for treatment. The nonprofit organization that had brought him to the United States arranged for a visa extension. A pharmaceutical company approved Khai for participation in an assistance program that gave him access to critical iron chelation medication. And a local hospital pledged to help cover the costs of Khai’s monthly blood transfusions.

Everything seemed to be going right in pursuit of better health for Khai – but Heather Ayris kept on researching, looking for better possibilities for the little boy who had become part of their family.

“Over the next few months, I made countless phone calls and sent email, trying to understand more about beta thalassemia major and the concerns with chronic iron overload. Most of the e-mails I sent went unanswered, but one very important e-mail received a reply – from the Cooley’s Anemia Foundation,” Heather explained. “I’m thankful every day for the response from Eileen Scott, Patient Services Manager at Cooley’s Anemia Foundation. Every time I called with a tearful question on how to make the treatments less painful for Khai or to celebrate the lowering of his iron counts, she was there!”

There can be pain associated with chelation (above), but Khai knows the chelation helps him to do things that he enjoys (below)

With a group effort led by the Ayris family’s love and persistence, Khai’s health is much improved. His ferritin levels are less than half of what they were upon his arrival, and he was recently accepted into a clinical trial for more advanced forms of combined chelation treatment. And equally important for both Khai and his American family, he’s really enjoying his life in North Carolina.

“Khai is in Boy Scouts; he started this past year and really enjoys it. He’s an ‘outside boy’ and enjoys hiking, nature and working in the yard,” Heather said. “He came to us knowing no English at all and previously was not able to attend school in Afghanistan, so he’s had to get used to formal education here. He’s now able to read and write and, while he has some catching up to do, he’s definitely on the right track. And we’re all very proud of how resilient all three of our boys – Khai, A.J. and Cade – have been.”
But, even though he’s getting more accustomed to life in the United States – and is benefiting from the level of health care available to him here – Heather Ayris is determined to keep Khai connected to his family in Afghanistan and his roots.
“We try to Skype with Khai’s Afghan family every two weeks or so. We purchased a laptop for them, and Skyping has made a big difference for Khai, being able to see them in person,” Heather explained. “However, because he’s not using his native language (Pashto) frequently, he’s losing his ability to speak and understand it. That really has made me sad because I don’t want him to lose his heritage.”
“His ferritin levels are less than half of what they were!”

Read More Profiles of Thalassemia Patients – People Whose Lives YOU Have Helped by Being a CAF Supporter!

Robert Mannino: Researching a Better Way

Aaron Cheng: Trying New Things Every Day

Rahul Kapoor: A Family’s Energy and Strength

Gabriella Turchi: A Bright Future Day by Day

“It’s important for him to remember where he comes from,” she continued. “We shared that concern with Khai’s family, but his father has told us that it doesn’t matter to them. It’s more important to them to see their child healthy and thriving, and they are just so thankful that he has another family here that loves and cares for him.”
And that’s exactly what Khai has.
Help CAF Keep Helping Patients Like Khai. Click Here to Make an Online Donation.
Roger Burks
Thatcher Hullerman Cook

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