Sonoma child with rare disease gets marrow transplant from Dad

Jack Yankee had a bone marrow transplant on Oct. 15 and his mom, Madeline Yankee, says he’s the happiest boy in the world, smiling even when he is in pain.

“He’s such a little trooper,” she says.

Jack was born with a very rare autoimmune disorder, X-linked lymph proliferative type 2. With only about 30 cases of it known in the world, the disease prevents his body from generating the necessary protein that regulates his immune system. Instead of his immune system working solely as defense against, say, a virus or bacteria, once it disposes of those invaders it can continue to attack other parts of his body.

For Jack, even a common cold could be life threatening.

But he is the inspiration behind Team Jack and a Be the Match Foundation bone marrow donor search that had more than 3,000 people, most of them from Sonoma Valley, swabbing their cheeks to give DNA samples in hopes of being his perfect donor. There was no match for 18-month-old Jack on the international registry and unfortunately the recent campaign did not discover a donor with the desired nine out of 10 (or better) potential genetic markers. The higher a donor is at matching all 10 markers with Jack, the better chance his body will accept the marrow donation.

Jack’s dad Alex Yankee has seven out of the hoped for 10, and was his son’s bone marrow donor last week at the new UCSF Benioff Children’s Hospital. Jack was admitted on Oct. 5 and began eight days of chemotherapy to prepare his body for the transplant. Madeline is living at the hospital with Jack, their home-away-from-home in an isolation room for six-to-eight weeks. Jack will continue to be in isolation at home for a year after he is released.

Eighty percent of bone marrow transplants are nonsurgical, as was the case for Jack. To prepare for the transplant Alex received two injections a day for four days to increase his stem cell count. The shots cause some achiness, and are the only uncomfortable part for bone marrow donors. Alex then sat through a five-hour procedure where his blood was removed from one arm, his stem cells were withdrawn from his blood with a machine, and then his blood was transfused back into his other arm. “When he got back to our room his was feeling just fine,” Madeline says.

Blood work was then performed on Alex’s donation, removing the T-cells, before being transfused into Jack. The chemotherapy had wiped Jack’s system completely clear, so that his white blood cell count was zero when he received the transplant. This protects against his body rejecting the new cells, the ones that will replace his immune system and cure him.

The family is now waiting to see if Alex’s cells will be compatible with Jack’s and achieve engraftment, a process that usually takes about two weeks. “This is the scary part,” Madeline says, as they are now in the waiting period. Once engraftment takes place Jack’s blood count will rise and he will begin to feel better.

The chemo really hit Jack hard, with some very unpleasant, to put it gently, side effects, but Madeline says he’s still “a happy little guy.” She brought plenty of his toys to their beautiful hospital room with a view of the San Francisco skyline, where Madeline holds Jack in her lap and reads books to him. His favorite thing is watching the “Frozen” video over and over and over again. “When he hears ‘Do you want to build a snowman?’ he lights up every time.”

Madeline admits to rough moments. Yet she’s smiling and animated and blinks off teary eyes. “I just kick into mom gear, and my husband’s been amazing,” she says. “I don’t want everyone’s heart breaking for Jack. He’s got a lot of fight in him. He’s a little rock, he is.”

The Yankee family’s friends are ultra supportive, and Madeline said she feels deeply appreciative. Their friends, known as Team Jack, and the nonprofit group Sonomans Offering Support, are organizing a dinner dance fundraiser on Nov. 12 at Rossi’s. For the fundraiser, Madeline is ”overwhelmingly” grateful, with a tinge of embarrassment and maybe a bit of guilt. “My friend told me to just shut up and be gracious,” she laughed, so she’s quietly accepting the love.

The Yankee’s Sonoma pediatrician, Charles De Torres and his wife Noelia, have been a locomotive driving care and kindness to the family, and led the way on the donor search. “He told me to never underestimate the support of a small town like Sonoma,” Madeline said, and she doesn’t. Madeline and Alex were both born and raised here, and are raising Jack and his brother Zack, 10, in Sonoma, too.

The fundraiser for Jack Yankee is Nov. 12 at Rossi’s 1906, located at 401 Grove St. Dinner is at 5:30 p.m.; a concert by a Bay Area cover band known for wigging out on Jackson 5 songs, is at 8 p.m. $75 for dinner and show; $25 show only. For information about the Team Jack fundraiser go to https://teamjack.eventbrite.com/