Editorial: Sonoma family turns to community to save 1-year-old son

Madeline Yankee’s son is named Jack. He’s a 13-month-old blondie, with super-cool race car pajamas.

I’ve got a Jack, too. He’s a 13-year-old blondie; he likes race cars, but the ones at Sonoma Raceway are more his level of cool.

Outside a handful of years in age, the two Jacks share a lot of similarities.

But this column is about a difference, one difference.

Jack Yankee was born with a rare auto-immune disorder. A disorder so rare that, according to Madeline, there are only 30 known cases of it in the world. A disorder so rare that Madeline is hesitant to name the condition in print due to the mountains of misinformation about it on the internet that would bring even more confusion to friends and loved ones.

But she says Jack suffers from X-Linked Lymphoproliferative Disease Type 2, and here’s the deal:

Jack was born with a gene mutation that prevents his body from producing a protein that regulates the immune system – in essence, after fighting off an illness his body has trouble telling his immune system, “Hey immune system – we’ve beaten the illness, it’s time to turn off.” Instead, his body continues fighting and attacking; if it goes too far, Jack could develop a condition called HLH. “That’s when his immune system goes haywire,” says Madeline, with his body attacking his body in a physiological civil war.

For that reason, Jack can’t get sick. Period. He’s being kept in isolation. When other toddlers are learning to play independently for social function, Jack stacks his blocks alone through dire necessity.

In fact, he recently fought off a minor illness which landed him in UCSF. But it left his defenses down and, Madeline says, his doctors describe his body as a “ticking time bomb.”

Jack needs a bone marrow transplant to beat this thing. He doesn’t need it next year, or next month. He needs it now. Jack’s family is on a full-on search for a matching donor – a real good match, one that his body won’t reject. Right now, their best option is Jack’s dad, Alex, who is about a 60 percent match – not bad, but they’d be in better shape with a 90 or 95 percent match, which could be anyone; bone marrow matches aren’t all about family.

Meanwhile, Jack soldiers on. At 13 months, he’s cruising around his house – probably on track to take his first solo steps within weeks. He laughs and shouts like toddlers should. He’s “on the verge of really talking,” says Madeline.

“He’s all boy – he’s a wild man,” she says.

But he’s no fan of the frequent trips to the hospital. “He doesn’t like the blood withdrawals,” says his mom. “Or when they poke him.

“It’s pretty brutal.”

Jack Yankee needs a donor.

His family is working with the Be The Match Foundation, which helps register prospective bone marrow donors. According to Frances Lee, of Be The Match, there are a lot of misunderstandings about donating marrow – 77 percent of donations are mere blood withdrawals for stem cells; it’s like a plasma donation, you’re back to work the next day. The other 23 percent of donations are taken surgically, through the hip. She says those donors are back in action in three to seven days.

Tonight at the Tuesday Farmer’s Market on the Plaza, Be The Match officials will be on hand to collect mouth swabs and register possible donors (must be age 18 to 44) – and raise awareness about Jack Yankee and others like him.

I’ll be in the registration line.

Because Madeline Yankee’s got a Jack who needs help.

And because I’ve got a Jack, too.

Email Jason at jason.walsh@sonomanews.com.