Sanfilippo Syndrome by Linera Lucas


Come right on in and close the door, quick before anyone sees you because I’m in time out again for bad words. Like I don’t have enough already to worry about. They really think this will stop me? A nice big Ha Ha. Don’t go away; it’s not like a cold, you have to be born with it and then you die. Unless of course you’re a carrier like a carrier bag or a carrier pigeon, and a pigeon is a rat with feathers and that’s us, the rat family: Mommy and Daddy Rat, Grammy and Grandpa Rat, Uncle Rat, Sister Rat (that’s me!) and of course, my little brothers, the rat boys, the lucky ones.

My little brothers might actually get to grow up, but not me. I’m twelve and a half and I probably won’t make it to thirteen. Why, you ask? I’m glad you asked. Thanks for asking. Well, it’s like this: when a daddy loves a mommy in a very special way. Oh, wrong lecture, sorry. Don’t worry, I’ll tell you all about it. Ready? My family is different. We have the Sanfilippo Syndrome, named after Dr. Sanfilippo, who I think must be dead or I would have been examined by him, but I bet he was a weirdo because why else would he want to study families like ours? I’d like to study him. I used to tell mom and dad I wanted to be a doctor when I grew up, but I’ve pretty much stopped unless I really need to hurt them. I didn’t understand why they always started talking about something else but now I know. Hey, the joke’s on me, no growing up for this kid. My boobs are starting and when I get my first period, I’m toast.

And it’s not a pretty death. I got on mom’s computer and here’s what I have to look forward to: seizures, paralysis, facial coarsening, speech delay, vision impairment, loss of muscle coordination, and let’s not forget, ta da – dementia. Basically I’m going to be a cranky vegetable and then an ugly corpse. And there are, ahem, mood changes, possible rages. This is a surprise? I think doctors are the dumbest. I can see them in their white coats, studying some poor sucker like me, frowning, taping their clipboards, saying, “I don’t know, looks like this mood change might be one of the later symptoms.” I mean, come on, give me a break. Oh, and what the Sanfilippo site called “behavioral abnormalities” are common, also mental deterioration. Great. Can’t wait. Maybe it would have been better if I’d been stupid to begin with. I do the times tables in my head every morning and as long as I can get through the twelves, I figure I’m good for another day.

So how come there are any of us at all? An excellent question, go to the head of the class. It’s because sometimes a daddy loves a mommy in that very special way and they don’t care that they are carriers like pigeons or bags or rats, they go right ahead and have more kids. For instance, even after mom and dad found out what was wrong with little ole’ me, they kept going and had my brothers, Erik and Sven.

I used to be an only child but when I turned six I got a surprise birthday present. Grammy had baked me a pink birthday cake and she told me to make a wish and blow out all the candles. I closed my eyes and wished that I could go to regular school instead of having to get on the short bus. Mom blew out the candles I missed and she said I was getting the best present of all, a baby brother to play with. I bounced so hard in my chair that I peed my pants and Grammy took me to the bathroom and no one scolded me. Now Erik is in first grade and he eats my dessert when I’ve been sent away from the table for talking back. Sven is still a baby and he holds up his arms for me to pick him up and cuddle, but I don’t want to any more.

The boys, my baby brothers, they might get to grow up and reproduce. Isn’t that great? Heartwarming. There’s some kind of fancy high-priced experimental treatment and my little brothers get to have it. But not me. I’ll tell you straight out that I am too damned old to have the damned gene therapy. So that’s my life. Mom says I’m supposed to be happy for everyone else, but I’m biding my time. I’ve got a little plan.

Bjorn, Terese’s father

I don’t like the way she looks at me lately. Sure, she’s my baby girl and she gets a raw deal and I’m cut up about it, but it’s God’s will and we have to make the best of it. It’s going to be hard on the whole family when she dies, our only daughter. Most of all I worry about Ingrid, my wife, how she’ll feel, what this could do to our marriage.

I love my wife. You gotta understand this. I first saw Ingrid at the summer gathering when we were ten. Typical Seattle picnic, rain drizzling, there I am in the buffet line under the awning, and on the other side of the long table dishing out pickled herring was a tall girl, my height and I was big even as a kid. She had yellow hair in braids, clear blue eyes, a serious expression. I swear I fell in love with her right then, holding out my paper plate. She spooned the slippery fish and onion so careful that no pickle juice splashed onto my blood pudding. We looked at each other and she handed the serving spoon to another girl and followed me to sit under a cedar tree away from the rest of the kids.

Even then Ingrid had this way of listening that made me feel like I was the best person alive on the planet and I never got that at home. Pop hardly ever said anything to anyone, and ma and my younger brother Leif mostly talked to each other. I knew the picnic was the last time I’d see Ingrid until the next summer so I asked for her address. She wrote it neatly on a paper napkin. I still have that paper napkin in my top drawer in a cigar box. The whole school year I wrote her, worked hard on those letters, didn’t want to sound like a dumb jock. See, I knew she was the one. But I kept it light, didn’t want to tip my hand. Heck, we weren’t even teenagers. I lived for the summer gatherings. When she turned fourteen she got kind of fat but that was good for me, meant the older boys weren’t buzzing around.

I slaved to get decent grades so my wrestling scholarship would kick in and I could get into State, and then she gets into that nice college with all those rich frat boys. She got good-looking right at the end of high school. Always was a big girl, but now she looked like a Valkyrie. Then in the fall of our freshman year in college she came to my wrestling meet. Surprised the heck out of me. I had won my match, a throwdown. She found me in the parking lot on my way back to the lockers. I was all sweaty but she didn’t seem to mind, stood real close. I leaned over and she leaned towards me and we kissed and we couldn’t stop and next thing you know we’re in the gym, because I have a key so I can go in early and work out, and we are doing it on the wrestling mats and then afterwards it hits me. What if she got pregnant? Maybe she’d marry me. So we did it again. And again.

A month or so later she tells me on the phone, all teary, that she was up the spout. I asked her to marry me and she said yes, but she had to be able to finish and go to law school, so I dropped out and went to work for Pop. We run a construction company, blasting mostly, whatever needs doing. Pop doesn’t hold with women working but for once ma was on my side. Ingrid took a quarter off from college for the baby to be born, then went right back. After law school she opened her own practice. Ma came over every day to take care of baby Terese, and then the boys when they came along. That’s the thing about family. We stick together. But I’m glad to be getting out of town with the boys for their treatment. I need a break from Terese. I love her and all that but inside I feel guilty because I keep waiting for her to die so we can be normal again. I feel awful about this but what can I do? Sometimes this happens and it must be God’s will.

Gustav, Terese’s grandfather

My granddaughter has got a way of looking sideways that raises my neck hairs. A girl like that isn’t natural. In the old country we did different, put them out of sight and got on with life and it was better for everyone. No good weeping and moaning. Talking never solved anything. And they shouldn’t be left around the other kids. Of course, my grandsons aren’t out of the woods yet, but that treatment is surely going to work and they are going to be fine. I need them boys to carry on the family name and the business, if it lasts after I’m dead because I know Bjorn will make a hash of it, got no more sense than a sheep. Wish I could leave the business to Leif, but he don’t like blasting. Leif always had the brains in the family, takes after his mamma. He looks like her too, more than me. Don’t want to think about that.

Me and Alma, we waited until we were married, not like Bjorn and that Ingrid. I respected my bride, and her father would like to have killed me if I’d not been taking her virgin up the aisle. For our wedding night the hotel was real nice and there was Alma in the bed, naked as a jaybird, pushing the sheet down with her feet. Left the lights on, to see me, she said. I wasn’t putting up with that nonsense. I turned out the lights and then we did it. She gave a little cry, just one. There was blood on the sheets, as there should be. Afterwards she lay there quiet. Maybe she was disappointed, felt she’d married the wrong man, but she stuck by me. I never raised a hand to her, not once in forty years of marriage. That’s a good husband. I put food on the table and I never touched her but once a week.

Alma, Terese’s grandmother

Family is all we got in this life. That Ingrid, I knew she had a bun in the oven but I didn’t let on, patted her shoulder and said it would turn out fine, she’d see. My Bjorn is a good boy and he did love that girl so. I saw it back at the summer gatherings when they were kids. He’d leave the games to go and sit with her and she was no prize then, hefty, though she turned out nice enough. I even hoped maybe Bjorn would hitch up with a girl outside the family, but anyways we can’t plan who we love and he takes after his father; his mind is set and there’s no changing it. So I wanted him and Ingrid to have a good marriage because it is for keeps. Maybe they’ll have the luck; sometimes the bad thing doesn’t happen. Gustav and me, we’re cousins and Bjorn is fine, never had no trouble. My youngest son Leif is fine too, but there’s another reason for that. And all the time I’m remembering the gatherings with those children that never had a chance to grow up. But I shut this out because what good can it do?

Right after Terese was born Ingrid said she was going on to law school. I ask you, isn’t she something, the first lady lawyer in our family. I was that proud. I could see Gustav didn’t hold with it, but he wanted grandkids as much as I did. I looked after the baby while Ingrid was studying. What a strange baby Terese was. Quiet and good for hours, then wail and there was no stopping her unless I bundled her into the pickup and rode out to the beach. The salt air calmed her, the waves would make her sit up and stop crying, but I could see she was hurting inside. Took her to the clinic but they never found anything. Until later, of course.

Even after what she did, I don’t hold with blaming her. She can’t help herself but she oughtn’t to be with her brothers unless I’m there. I’m the one who caught her. She was standing between their cribs with a match, the blankets smoking and flames licking the rails. I didn’t think I still had running in me, but I swung those babies up and took off down the hall, set them in the playpen and ran back. Terese watched me pull the pin on the fire extinguisher and spray down the flames. The fire had burned off some of her pretty hair. Then we went to the boys, who were red with crying and Terese looked so sad. I know she’s sorry.

When Bjorn came home I told him and he grabbed Terese to spank her but I told him no, he mustn’t, and he went upstairs to the boys. He’s not one to ponder or forgive; he’s got his mind made up and sees no reason to change. Thick as a brick. Just like his dad.

Sometimes I wish I could run away. I’d have a little apartment all my own and the young mothers would come to me with their babies and I’d take care of them and they’d ask me for advice. I’d hold the babies, their sweet bodies heavy in my arms, and the mothers would bend forward to tell me their secrets and I’d nod, and then I’d tell them how to make their babies stop crying, settle down for sleep. Doesn’t anyone want to hear all that I know?

I’ve put some by, escape money. It’s easy because I do the books and Gustav never was good with figures. I want to give the money to my younger son and tell him to leave and don’t look back though it’ll break my heart to lose him. Because now Leif, I think he’s met someone, though he hasn’t told me, and likely enough he’s afraid to marry her, doesn’t want to bring down ruin on her, doesn’t want more babies in the world like our little Terese. But he needn’t worry.

The only time I was ever on my own was thirty years ago when Gustav was laid up in the hospital with his back. No one watching me. I felt free and it must have showed, I must have looked specially good. Bjorn was in first grade and I decided that when he was through high school I was going to leave. The idea filled up me up, I was brimming with it. One afternoon I left my husband’s hospital room for a cup of coffee and in the cafeteria I felt that burning look and there was this man. I thought all that was behind me. But he found me fair, as it says in the Bible, and we knew each other. All my freedom went for that. If I had it do to again, I’d get on the next bus and go anywhere. I was a fool. Sometimes I think Gustav knows, and won’t let on just to torment me. But when I found out I was pregnant I knew it was my punishment. I had thought that when Bjorn was out of the house maybe I could go and get my own life, but the Good Lord had other plans and maybe the wages of sin are not death but another life to take care of. Shame on me for thinking that way. So I got Leif. Maybe I spoiled him a bit to make up for not wanting him in the beginning.

I’m going to tell Leif about his real father. I hope he’ll still love me but even if he doesn’t he can use the money to make his own life. I’m going to do this. But not yet. I need to work up to it. I know that I can’t leave. I have to stay and take care of Terese. That child worries me. Something’s not right. She could get dangerous. Sometimes these kids do, the ones with the problem.

I feel it rise up in me, the wanting to tell the truth, to break open the silence. I’d start with what it was like living with Gustav all these years, wanting something I don’t know what, but not this. Remembering what I had with Leif’s father and that wasn’t enough either. I thought it would heal me, make me who I am inside, but it only made me a mother again. Now I take care of Terese every day. I’ll be with her to the end.


Here’s the deal. The night before mom and dad took my brothers away for the gene therapy we were all in the kitchen for supper. Mom had made meatloaf and corn on the cob, which is my favorite, but I couldn’t eat anything. You see, before dinner, when dad was outside playing catch with Erik and mom was putting Sven into his high chair, I snuck into mom and dad’s bathroom and counted her tampax. The count was the same as last month and the month before. Two months without a period; I knew what that meant. Then I heard her yell that dinner was ready.

I sat down and looked at my plate of meatloaf and the nice ear of corn. Dad motioned for me to pass the butter.

“Let’s play a game.” I said. “It’s called, I don’t give a fuck about genetic testing. Hey, you two win, hands down.”

Dad stood up so fast his chair fell over and I wondered if this time he was going to belt me but instead he slammed out the back door.

“Bad word, mommy, bad word,” Erik said.

Sven banged his spoon on his tray and mom didn’t even stop him. She looked at the church calendar where she crosses out each day and she kept on shoveling in the meatloaf and chewing. I folded my napkin and took my plate to the drainboard and went up to my room. Maybe mom was telling herself that she only had to make it through one more night with me and then she and dad and the boys would be away at the clinic for a whole week. Maybe she was thinking about the bills and if she was going to have to ask Grammy and Grandpa for money again, or maybe she was thinking about how much easier it will be when I’m dead. She came into my room later on and I pretended to be asleep. I’m so stupid I kept hoping she would kiss me or smooth the sheet or something, but she just stood there in the dark, and then she left and I heard the door click shut.

Ingrid, Terese’s mother

I know I need to put Terese in care but it feels like ripping off my arm. However, it’s the hard things that tell us that we are doing our duty. I used to look into her eyes and see myself, but that’s gone. Her intelligence has been corrupted by her condition. That’s why they are sequestered, the children with the problem, so they can’t hurt the rest of us. Terese has crossed over and I can no longer reach her.

When my mother-in-law told me that Terese had tried to incinerate her brothers I was furious with myself. I can’t blame Alma; she’s no match for my daughter and there’s an odd pride in that. Even in her evil actions Terese takes after me. But once we get back from the clinic I’m going to put her away. She needs to be with her own kind and perhaps she will thank me for removing her from temptation. I will visit her as often as I can. So will Alma. I don’t know about the others. I think it will be best to tell her brothers that she has gone on a trip. Then later, when she has died we will all go to the funeral. Closed casket. I want her brothers to remember her as a good sister. I’ve told them that she saved them from crib fire. They are young enough that this will eventually become the family legend.

Each baby I carried I had such hopes for. Terese was so bright, my little star. I could see her as a doctor or an engineer or anything. My secret dream was that she’d want to follow me into the law and we’d set up a practice together, mother and daughter partners. But then the wailing started. Even before the lab results came back, I knew. So we had the boys because we are meant to be fruitful and multiply. Now there is this miracle, the new treatment. I ache for Terese. Her path is dark but soon she will be in the light; she will live on in the boys and the new baby. I must focus only on what is possible.


Today’s the big day. Mom and dad are bringing the boys home from the clinic. Grammy and Grandpa went to meet them but Uncle Leif stayed home with me because there would be photographers at the airport and I don’t look so good in photos any more. Deciding about my uncle was hard, because when people stare at me he makes faces as if they are staring at him, but then he told me he met someone. I asked him if he told his girlfriend about our problem and he said no. She wants a big family, he said. Then he let me stay up past my bedtime and watch scary movies until I fell asleep on the sofa. I woke up in my own bed so he must have carried me upstairs. I wish I’d been awake. Nobody else touches me anymore.

I don’t know how much longer I’ve got so whatever I do has to be soon, but I do know that burning is the way to go because flames purify everything and our souls go straight to Valhalla. It’s what our ancestors did. My first plan was to pour gasoline from the lawnmower all over the living room rug and then when they came back from the airport and were standing around, I’d light a match. But I worried they’d smell the gasoline when they came in the front door. So yesterday I tagged along with Grammy when she went to the shop to do the books and it was easy to boost fuses and a couple of fire sticks. I set up the blasting kit in the living room behind dad’s lounger because either I’m already completely nuts or I’m the only sane one in my family. Everything I do is wrong anyway, so how much more wrong can this be?

I hear the cars coming down our road, Grammy and Grandpa in the pickup and Dad driving the station wagon. The gravel churns as he takes the last turn a little too fast the way he always does. Mom is probably frowning at him. My little brothers are in the backseat. Maybe they aren’t going to get sick, but they can still pass on the bad gene to their kids. How come it’s up to me? I’m only a kid. What if I’m wrong and this isn’t the right thing to do? Now I hear them on the front steps. I have the book of matches open in my hand, but my fingers are so slow.

Linera Lucas
Linera Lucas

Linera Lucas won the Crucible Fiction Prize and has had short stories and poetry published in Elohi Gadugi Journal, Crucible, r.k.v.r.y, Boomtown Anthology, Pindeldyboz, VerbSap, VoiceCatcher Anthology and elsewhere. She has an MFA from Queens University of Charlotte and has taught creative writing in Seattle at the University of Washington Women’s Center and at Richard Hugo House. She maintains at blog at

One comment

  1. It’s hard to write a short story sharing multiple POV but I think this story was well put together to give a fuller understanding of the family Terese comes from. I feel for Terese. I’m not sure whether she was able to achieve what she wanted in the last paragraph but I like the open interpretation


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