“She’s very good at politics,” says Jacob Grossman. “She’s living in DC. She has blond hair. She’s better than me at singing the presidents song. She’s very good at history. She’s deaf.” He’s talking about his sister, Talia Grossman, from whom he received a bone marrow transplant when he was three and she was five. Jacob is 18 now, a medical miracle considering that when he was born, the life expectancy of people with Fanconi Anemia (FA) was ten years.
FA is a rare genetic disease that appears mostly, but not exclusively, in Ashkenazi Jews. Jacob’s is an extremely severe case. He was born with no thumbs and one poorly-functioning kidney, among other problems. “When he was born, a doctor would come in every day and discover some new problem with him. One after another,” says his grandmother, Fran Grossman.
He’s since had heart surgery, two hand surgeries, anoplasty surgery, ACE surgery, a g-tube installed, a colostomy surgery, and a kidney transplant when he was ten. His parents don’t know how many surgeries he’s had total—it’s literally too many to count. Just since October, he’s been under anesthesia for surgery seven times. “They’re keeping him together with a bandage,” says Fran. “A quiet day is a good day.”
This has been Jacob and his family’s constant reality for 18 years. And yet, Jacob is a beacon of light, his family remarkably buoyant.
“When Jacob’s in a good mood,” says his mother Rachel, “he can get the whole room engaged. He organized everyone for the prom pictures; he was talking with the dads, the moms, the kids. When he’s on, he’s really on.” He’s doing something right; he had a really cute prom date.
Rachel, a warm and calming person, is unsurprisingly a social worker–the one to whom they send the most difficult cases. Alan, Jacob’s father, is a karaoke king and something of a Facebook comedy star. Some of his recent statuses include: “I bet when Hugh Hefner dies, no one will say ‘he’s in a better place now.’” And “I’m going to be the first person to land on the sun. I know what you’re thinking and that’s why I will be going at night.”
“Once he wrote a joke about Helen Keller,” says Talia, laughing. “My mom was like ‘your daughter’s deaf, like stop.’” How do they maintain this kind of humor and buoyancy? Jacob may be an enormous challenge, but he’s also part of what keeps them going.
“There’re 5,000 kids at his high school and every one of them knows Jacob,” Fran says, “and they don’t treat him like a little pet.” His classmates have continuously sent him presents and cards when he’s in the hospital. Fellow students have even picked him up to take him to the movies.
He has some cognitive impairment, but knows his schedule and reminds his parents about his medications. He loves studying history and playing word games. He’s got a good memory for details. As his mom talked about an outdoor adventure on a trip they took to Israel, he corrected her: “not a dune buggy, mom, it was a jeep.” In some ways he’s a typical teenager who likes to swear when he gets IVs, especially if he doesn’t like the nurses.
It’s hard to imagine that Jacob’s sweetness, health, and accomplishments can’t be somewhat attributed to the remarkable care of his family and community. Alan immerses Jacob in music. “When he’s having a hard day, we sing together in the car.” he says. Talia attends college in DC but they talk on the phone often. “He called yesterday and said he was worried about his social studies test,” she says, “he took a practice test and got an 88%, he said he couldn’t do true or false and was really upset. I said ‘It’s fine! You did your best!”
“They refuse to put him in a bubble,” Fran explains, “They travel with him! They schlepp on an airplane with 18 meds a day! He can never be left alone. He must be fed every 3-4 hours, catheterized three times a day through a tube, which he can’t do himself. You have to change his ‘ostomy bag.” Because he was born without thumbs, his hands aren’t able to do small motions. So something like a zipper requires help. “Rachel doesn’t say ‘I can’t do it. It’s too much for me.’ I don’t know how she does it 24/7.”
Rachel says her training as a social worker helps. “It works in reverse, too, since I’m more adept at handling intense situations, and knows what it’s like to be the parent receiving advice. They also get help from nurses and caretakers at home and school.
Talia explains that Jacob gets jealous of her because she can do things “typical” teenagers can do like get a license and go to college. She says he isn’t always able to express his emotions and might resort to hitting if he gets mad. But she knows “he doesn’t mean it.”
She says Jacob has made her a more accepting person, more aware of the world around her, of people’s needs in general. She says that the attention her parents had to pay to Jacob prepared her to be an independent person—a skill that she noticed not everyone had when she got to college. “It’s hard when he’s in the hospital but I know other families where the attention isn’t 50/50 anyway,” she says.
Even as his devoted caretakers, Jacob’s family is the first to point back to his own strength: “I think it developed over time because he’s had challenges since birth,” says Alan. “His stubbornness might be why he’s still with us,” says Talia.
And their strength? It’s Rachel’s job to describe coping skills, but asked about hers, she’s modest and pragmatic:
“You just do it,” she says. “You might get crabby or snippy. I knit, I read, I find comfort in food, in being with friends.” Alan, a music lover, has developed a passion for karaoke and goes to concerts almost every week.
They also point to the enormous support of their community. When Rachel has been away with Jacob at the hospital, her friends have brought dinner to Alan and Talia, and even driven Talia to school. For Jacob’s 18th birthday, the family was set to throw 250-person fundraiser for his party, but during the planning period, Jacob (and Rachel) ended up in the hospital. Her friends stepped up and planned the party in her absence.
Still, Rachel doesn’t sugar coat it: “You’re scared like he is, but as a parent you want to show your child that you’re their strength, so they can see it in you and know that they’ll be OK. I know that when I’m upset it impacts him, so I try very hard not to get upset. Sometimes I look back after and ask, ‘How did I get through that? How did I sleep?’”
In the beginning, she didn’t much. As Fran recounts, she went back to work three months after Jacob was born and was up all night with him, and working all day. “For me it’s not a choice,” Rachel says. “Jacob needs a mommy.”
But it’s clear that Rachel goes far beyond the role of mommy for Jacob. She is often his nurse, his social worker, and his full-force medical advocate. She became an expert on FA and Jacob’s conditions, and never settles for what the doctors say, always asking herself, “well what if that doesn’t work?” She researches constantly. “She walks into an emergency room and she’s an encyclopedia, with the doctors just shaking their heads,” Fran says.
Not only do the Grossmans have to make sure Jacob gets the treatment he needs, but they’ve even had to raise funds for research to figure out what those needs are. Fanconi Anemia is called an orphan disease—there so few people who have it, the government doesn’t fund research for cures and private companies aren’t incentivized either since any drug would have a small market. This has meant that the families and friends of families of people with FA have funded almost all of the research themselves through constant organized fundraising.
The good news is prenatal tests for Ashkenazi Jews have now grown to include FA on the docket, so it’s likely that far fewer kids will be born with FA in the future. Meanwhile, Jacob just danced so hard at his prom he fainted on the dance floor. “There’s ups and downs,” says Rachel, “the road ahead is going to be challenging.”