The story kept popping up everywhere: Facebook, Twitter, newspapers, TV. The story of an adorable four-year-old Belfast boy who not only had a rare genetic disorder, but who had also developed a rare and aggressive cancer.

The genetic disorder is Jacobesen’s Sydrome, which affects 1 in 100,000 children. It can cause problems with motor skills (sitting, standing and walking), learning difficulties, and even physical problems, including heart defects.

The cancer is neuroblastoma, which also affects 1 in 100,000 children. It’s a malignant tumor developing from nerve tissue that usually occurs in infants and children.

Getting one was bad enough. Getting two. . .”He’s been pretty unlucky,” admits his father, Stephen, a hospital engineer in Belfast.

Bad luck has been dogging “wee Oscar,” as he’s known in the Twitterverse, from Belfast to Philadelphia, where his parents brought him in early October to undergo immunotherapy, a treatment only available in one place in the UK, that uses special antibodies to train the body’s immune system to fight off the cancer on its own.

Supporters, including Olympic boxer Paddy Barnes, and many GAA players in Antrim and Tyrone, had raised more than $400,000 to pay for Oscar’s treatment at Children’s Hospital of Philadelphia (CHOP). On October 6, Stephen, his wife, Leona, a software developer, flew over with Oscar and his two-year-old sister, Isobella, known as Izzy.

But the October 13 blog entry by Leona tells it all. “It all goes wrong in Philadelphia,” is the headline. Oscar, who had just finished a course of radiotherapy for his cancer, was undergoing testing at CHOP when doctors discovered another problem. It was pulmonary hypertension, abnormally high blood pressure in the arteries of the lungs that makes the right side of the heart work harder than it normally does to pump blood through the narrowed arteries in the lungs. It’s also rare.

“The doctors suspect that it may have to do with his chemo or stem cell transplants, but they don’t know,” says Stephen.

For a few days, it looked like it was going to be this latest rare disease to strike Wee Oscar that was going to take him away. “He was pretty sick. The doctors didn’t know if he was going to make it so they prepared us for the worst,” says Stephen. The Knoxes even said their goodbyes, letting little Izzy spend a last few moments with her brother.

It appeared to be the last of a series of cruel blows. Before he was diagnosed with neuroblastoma, Oscar had made such strides in therapy that he was attending a mainstream play group at home. “He had done really, really well,” says Stephen. “One of our biggest worries is that we would have to go to a special school, but he was on par with the other kids so we were over the moon about that.”

Even the neuroblastoma appeared to be in remission when they bundled Oscar onto a plane to come to Philadelphia.

But, on Thursday, October 18, Leona’s blog told a much different story. “He did it, Oscar did it! He fought his way back from the brink and is doing remarkably well,” she wrote.

“He really bounced back,” says Stephen. “He’s on the mend. And we’re hoping to get him home very soon and get the problem with his lungs treated so he can get back to normal, though he won’t be able to have the immunotherapy.”

The Knox family is planning to leave Philadelphia next week. But Philadelphia won’t be far from their minds—and hearts. They didn’t know anyone when they arrived, but they do now.

Thanks to those tweets and Facebook posts, members of the Philadelphia Irish community found the little boy and his family and swathed them in love. “We were shown unbelievable support,” says Stephen. “People got in touch with us through Twitter and Facebook. They came to the hospital, bringing homecooked meals, gifts for the kids. People offered to have us come and live with them and offered us the use of their cars. This was an incredible effort of the Irish community here in Philadelphia. We’ve been very well looked after.”

Among those who reached out were Havertown native Aisling Travers and Irish-born Fidelma McGroary, who traveled to CHOP on Sunday to bring a gift basket of Irish food and balloons for Oscar. “We had seen on Twitter that Oscar loved balloons. We didn’t think we’d get in so we were going to leave everything at the nurse’s station but they told us to go around to his room,” says Aisling, who is a student at West Chester University. “Leona was overwhelmed and started crying. We were the first people they met and soon people were bringing dinners down and sending e-cards. They were overwhelmed by the generosity.”

On October 28, a Tyrone native, Brian Magarity, and his wife, Laurie, will be running a bake sale at Sacred Heart Parish in Havertown to raise money to help the Knoxes, who went through the entire $400,000 just keeping Oscar alive in Philadelphia. (“Thankfully we were in the best hospital in the world, or he might not be here,” says Stephen.) The local group that’s formed around Oscar will also be selling wrist bands and t-shirts. Other events are also in the works. (Check our calendar for listings and details.)

There are a lot of sick kids in the world. What is it about Oscar that touched so many hearts. “He’s so cute!” says Aisling, who visited Oscar on her birthday on Friday and was gifted with a stream of blown kisses.

In fact, says his dad, it may his genetic disorder that gives him “a very special wee personality.”

He doesn’t have an ounce of shyness in him. “He talks to everybody and is always laughing and joking,” says Stephen. “He’s always happy and positive. It’s unbelievable, after all he’s come through.”

Though the Knoxes are looking forward to going home, Stephen says they’re also “a little sorry” they aren’t going to be in Philadelphia for six months as they’d planned. “So many people here reached out to us and made us feel well looked-after. We’ll never forget it.”

Author: Denise Foley

Denise is one of the founding editors of irishphiladelphia.com and a veteran magazine and newspaper writer and editor.

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