1) Six months into the treatment, what physical changes have you noticed in your child?
Okay well, we noticed changes almost immediately. Within a few days, his face looked different. My husband and I had seen the “Before and After” photos in your commercials, but frankly we’d assumed those were exaggerations (a.k.a., BS—sorry, but that’s what we thought). How much of a “miracle pill” could your product really be, and how quickly? We’d done some research and knew that the “modifications” were often more gradual, subtler than advertised. But the truth is right away, certain physical traits associated with our son’s genetic condition—abnormalities—started disappearing. Just like in the commercials.
2) Please describe the nature of any physical/health modifications mentioned above.
There are a lot. First, his face. The whole shape of his forehead changed, became less scrunched together. It’s hard to describe, but his face just kind of stretched out. His eyes got farther apart. The bridge of his nose narrowed. Blake would go to sleep and the next morning I swear his face would be different. It was that fast. I’d always wanted him to look like other kids, to fit in, and suddenly he did. By the middle of Month Two, he looked almost fully normal, facially. It was astonishing.
Blake also grew four inches, which was obviously strange for a seventeen-year- old boy who hadn’t grown in years (short stature is a common trait of his genetic deletion). His posture became more upright, less hunched. He got thinner, longer. His skin got clearer. By Month Three, he looked not just normal, but handsome. (I know, I’m his mother, but it’s true!)
Blake’s body also changed in terms of, well, his private areas. This is an awkward topic, but my husband and I have always had to help Blake wash himself, because he just didn’t have the fine motor skills. But once he started to get hair down there, I stopped doing bath time. It didn’t feel right. I’m his mother. At that point, his dad took over.
Boys/men with Blake’s syndrome tend to be underdeveloped sexually, which always felt like a strangely cruel symptom (not that Blake ever knew, he was always so innocent, which I suppose was a gift). But a few weeks into the gene therapy treatment, my husband said it was like “delayed puberty” hit. Suddenly, Blake looked like a normal teenage boy. One night, when my husband went to help him shower, Blake stopped him.
“Can I please have my privacy?”
My husband and I looked at each other like the cat had just politely inquired if he could borrow the car for the evening. This was a kid we were told would never be independent.
“Of course,” we said.
And that was the end of bath time with Dad.
Blake also stopped cuddling with me on the couch at night. I know, what teenage boy still cuddles with his mother? But mine did. He’s our only child, so I loved that he stayed so cuddly for so long. Even as a teenager, he was always small enough to fit into my body, curled sideways as we watched TV. But he stopped wanting to do that by Month Three.
And that’s probably as it should be.
He’s too big now anyway.
3) Please describe the nature of any emotional/behavioral modifications in your child.
A few weeks in, Blake started to sound like a different person. Strangers used to have a hard time understanding him. Sometimes I’d forget about this, but then we’d go to a restaurant and Blake would order and the server would say, “I’m sorry, what?” and it was always a punch in the gut. Oh right, my kid’s not normal. People don’t get him, they don’t speak “Blake.” (There were even times when my husband, who works a lot, wouldn’t understand what Blake was saying to him, which was hard.) Whenever I’d see that lost look on a server’s face, I’d jump in and order for Blake. Head it off at the pass before I could get too angry or sad.
In high school, Blake’s favorite restaurant hired this boy from his school, Sebastian, as a server. I hated the way he sneered at Blake. “Could you repeat that?” I remembered him making fun of Blake on the playground as kids. Sebastian was a teenager now, with stubble on his face (Blake’s was still baby-smooth) and tattoos on his arms, but that look was the same, that mean little boy look. I’d always wondered if it bothered Blake. He never said anything.
Thankfully, Blake didn’t have to deal with kids like Sebastian often. His “Specialized Learning Programs” were always off to the side or in the basement of whatever school he attended. Probably designed that way to protect kids like him, but it always felt somehow diminishing. Like they were these inconvenient ghosts left to haunt some forgotten fluorescent hallway. Like they weren’t really there at all.
About a year ago, before the treatment, Blake came home one day, sat down to the celery-and-peanut-butter snack I made him every afternoon, took a bite, and said, “Mom, I’m in love.”
This wasn’t the first time Blake had expressed interest in a woman. Scarlett Johansson. Or his occupational therapist. Always someone farfetched, grown-up. But this time it was Maggie, one of the girls—young women, I should say—in his program. My husband and I were surprised and thrilled. Maggie was sweet and kind. She loved to sing and even had a small part in the school musical one year. And though her condition was different from Blake’s (she had Down syndrome), they shared many of the same physical and developmental challenges.
Blake said he wanted to take Maggie to the mall on Saturday. I played it cool, but my heart was bursting. I called up Maggie’s mom, Vanessa (it felt like I was asking her out!), and we took the kids on their first date. At the mall, we gave them space. Vanessa and I sat at the café chatting, gossiping about the faculty of the kids’ learning program (we were both convinced the occupational therapist was sleeping with the speech therapist) and gleefully trashing various mainstream kids (sorry, but that’s what parents like us do—Vanessa hated that bully Sebastian’s guts as much as I did!). But we never took our eyes off Maggie and Blake. We were more nervous than they were! At one point, Blake took Maggie’s hand. They walked like that all over the mall, holding hands. Blake bought her a pair of pink camo sunglasses from Sunglass Hut and placed them gently on her face. It felt like Vanessa and I had just witnessed a kind of small wedding ceremony, like we were all family now. I’ll admit, I cried a little on the drive home. Blake noticed and asked why I was sad.
“Oh, I’m not sad, sweetie,” I said. “Mommy’s not sad at all.”
Blake and Maggie dated like this for a few months, holding hands in the halls at school, exchanging gifts without occasion (I helped him pick out a cute pair of earrings). But after he started the treatment, things changed. One evening, I overheard their nightly phone call (okay, maybe I was eavesdropping). He had her on speaker, chatting about their day, and I stopped in my tracks. Blake was speaking in these long, lucid sentences, the words all intelligible, the ideas all sequenced properly. He was speaking the way I’d always pictured my child speaking, before I had a child. And Maggie just couldn’t keep up. She kept getting confused, missing his point. The next couple of nights, that’s how their calls sounded. Blake moving faster, Maggie staying the same. One evening, I overheard him say, “Maggie, I have to go, my mom’s calling me.” He got off the phone. But I hadn’t called him.
I went into his room and said, “Excuse me, did you just lie to Maggie?” He didn’t answer. “It’s not right to lie.”
“It’s not right to eavesdrop,” he said.
And then this boy—this man now, really, with a different face and a deeper voice—got up, walked to the door, and shut it, calmly, in my face. And locked it. (I’d forgotten there even was a lock on his door.) And then I heard the muffled sound of him calling someone on the phone, someone I didn’t know.
I went to my husband. “You have to help me with this Maggie thing, it isn’t right.” He said a teenage boy deserves his privacy. I said no, this is all going to blow up, and you’ll be at work, and I’ll be the one who has to deal with it.
“You’re the one who wanted this,” he said. “You’re the one who signed him up for the treatment, you’re the one who feeds him those pills every day.”
“Don’t act like you weren’t part of this decision,” I said. “Don’t act like you didn’t want this, too.”
And well, that led to an argument…
But I was right.
Because the next day, Vanessa’s car pulled up to our house and Maggie got out, her face puffy and red and somehow smaller, pinched together with pain. She rang our bell. “Is Blake home?” she asked. “He doesn’t call me anymore.” I said yes and invited her in, but she shook her head. I walked to Blake’s door (locked) and said, “Maggie’s here to see you.” I heard a big sigh before he opened the door and passed by me without eye contact. I went upstairs, but I couldn’t help it, I peeked out my bedroom window down at the porch. Maggie was yelling at Blake.
“You’re mean! You’re a mean person!”
Blake looked so much bigger than her now. “We talked about this, Maggie,” he said. “Remember? We can’t be together anymore, but we can still be friends.”
Patient and calm and horrible. Maggie was crying.
“I don’t understand,” she said. “I don’t understand.”
I suddenly got that feeling you get when you’re being watched, and sure enough, Vanessa was staring up at me from her car. Watching me watching them. And she looked so...angry. At me. Like I was the one dumping her daughter.
Blake said, “Let’s go for a walk,” clearly embarrassed to be doing this in full view of Maggie’s mom (and, I’m sure he assumed, me). He took Maggie’s arm to lead her away.
“Don’t touch me!” she said, pulling away. “You don’t touch me anymore!”
And I wondered, for the first time, how much they’d touched each other. I’d always assumed they were “boyfriend and girlfriend” in name, mostly— they weren’t alone very often—but I realized I didn’t know for sure. Maybe they’d touched each other in ways I didn’t know.
“You don’t touch me anymore!” she screamed again and stormed back to the car.
I heard Blake walk back to his room and shut the door.
Later, I texted Vanessa I was sorry they’d broken up. She didn’t write me back until the next day.
“Blake is different now. I hope it is everything you wanted.”
I found this insulting and judgmental, so I typed out, “It is everything and more. You should consider doing the same, for Maggie’s future.” But then I remembered Maggie’s syndrome wasn’t one of those eligible for the treatment and realized it would be a cruel thing to say. So, I erased it, and I just didn’t reply.
4) How have you and your family adjusted to the modifications in your child?
To be honest, my husband has had a harder time. Which surprised me. Sometimes he comes home late, already a few drinks in, and starts asking about “Gene”—“How was Gene’s day? What did Gene get up to today?” It’s his way of throwing it in my face. Like I’m the only one who wanted to try gene therapy. The only one who stayed up late researching it. The only one who signed the consent forms. It’s frustrating. Because when Blake was born and we learned of his syndrome, my husband was devastated. He stopped going to church, swore off “any God that could do this to an innocent child.” On some level, maybe all he’d ever wanted was a son to play catch with, which didn’t seem too much to ask. But Blake was never going to be that kid.
My husband started working longer hours, ostensibly to provide for the bigger financial pressures we’d have. Drinking more. Years passed. But when we saw your company’s commercial on TV, a gene therapy program that could compensate for genetic deletions, could help make up for what was missing, my husband said, “Holy shit, that’s Blake. They’re talking about Blake!” He wanted to try it just as much as I did.
But, speaking of deletions, he’s apparently deleted this from his memory…
I’m sorry, this is all too personal. I’m just not sure how to answer some of these questions.
5) Please describe any academic changes your child has undergone so far.
In Month Three, I got called in to Blake’s school to see the principal and the head of the Specialized Learning Program. I figured something was wrong. But they both wore big smiles.
“It’s a miracle,” the principal said. “We’ve obviously never seen this before but…Blake is ready to join the mainstream learning program. He’s outgrown where he is now.”
In disbelief, I looked over at Maria, the learning specialist. She smiled at me, nodding.
“He’s ready.”
I went home and told Blake I was so proud of him. He turned all red. “It’s just the drug, Mom.”
“No, sweetheart,” I said. “It’s you. It’s you.”
The first day I dropped Blake off to normal, full-fledged, chaotic high school, I wanted to go in with him. “I’m seventeen, Mom,” he said, rolling his eyes as he got out of the car.
All I could do was watch him walk up those front steps with his new walk, his new neck, his new shoulders, looking not just like an adult, but a fit and sturdy one. Long after those double doors swallowed him up, I sat there, waiting. I don’t know what for. But I waited a long time. No one came out. My phone didn’t ring. So, I drove home. And kept waiting. And drank wine at lunch. Finally, at 3:30, I picked Blake up and asked him casually, “How was school today?”
“It was fine,” he said.
And that was it. His big debut as an independent, mainstream high school student, seventeen years in the making. And all I got was: It was fine.
6) Please describe any social/relationship changes in your child’s life.
I encouraged my husband to spend more time with Blake. To go out and play catch, like he’d always wanted. One spring day, my husband tossed Blake a glove and they went out to the backyard. I watched them from the kitchen window, wiping away tears. It was like we’d finally been cast in a film we’d spent years only watching. I said, “Thank you,” out loud. I don’t know to whom, I’m not religious. (I guess to you, to your company.) Blake had a strong throwing arm now and after dropping a ball or two at first, he didn’t make another error.
After about ten minutes, Blake came back inside. I asked why so short, and he said he’d gotten cold, then went into his room. My husband came in, went back to his home office. I peeked in and said, “Short game, huh?” and he said Blake had gotten tired. I said they could try again tomorrow. My husband said yeah, maybe.
And that was basically it for catch.
Blake made new friends and started coming home on his own from school, late, hopping out of an unfamiliar car. When I’d ask what he’d been doing, he’d say, “Hanging out.” One day, I was out running errands in town and I drove past a young couple sitting on the hood of a parked car, holding hands. The girl caught my eye first. Pretty. Pierced nose. Puffing on a cigarette. Then I looked at the boy, and it was Blake. I almost rear-ended the car in front of me before jamming the brakes. The girl passed the cigarette to Blake, who ashed it and took a drag. The light changed and the cars behind me started to honk, but I lingered long enough to see Blake lean in and kiss her. Just a small kiss, a peck. But clearly not their first.
At dinner, I asked Blake about her. He told me he didn’t have to tell me every single detail of his life, and I said okay, that’s fair, but I love you and I’d like to know if you have a girlfriend. He said he didn’t know yet if she was his “girlfriend” and that he didn’t appreciate me spying on him. He didn’t even tell me her name.
I started to see less and less of Blake. This was a boy who’d been by my side his whole life. Who’d been so dependent on me. Now I didn’t know where he was a good deal of the time. I called our pediatrician to ask if this was normal, so much change, so fast. She said the drug was too new to say. I asked what she knew about your company’s disclaimer that stopping treatment could lead to serious health complications and she said, very carefully, “You are my only family currently pursuing this treatment”— which honestly felt like she was judging me—“so speculating about the ramifications of stopping treatment would be medically irresponsible.”
I said thanks and hung up, knowing we wouldn’t go to her anymore.
7) Please describe any questions or concerns you may have so far with the treatment.
The part of your company’s PR that seemed the most far-fetched to me was “increased physical strength in a certain percentage of patients.” That felt like a lie to lure people in, to prey upon parents who wanted not only to “fix” their kid, but to turn them into some kind of superhero. I found it manipulative. I almost didn’t sign up for the treatment because of it.
But that is exactly what happened with Blake.
Which brings us to today.
Today I got called in to Blake’s school, just after lunch. This wasn’t an uncommon event, pretreatment, due to Blake’s genetic tendency to get sick (he doesn’t anymore) or his gross motor skill issues (he used to fall, get bloody noses, etc.), but I hadn’t gotten a call like this in months, so I was already anxious driving in.
The woman at the front desk said Blake was in with the principal. She seemed nervous. Out the window behind her, I noticed a parked police car, lights flashing. When I entered the principal’s office, Blake didn’t look up. He was wearing a light-green button-down shirt (he never used to wear button-downs, because he couldn’t button the buttons) and it was splattered with blood. Quite a bit of blood.
“Oh my God, are you okay?!” I said, rushing over to him.
“It’s not mine,” Blake said, eyes on the floor. The principal asked me to sit down.
He explained that Blake had been eating lunch with his girlfriend. (Earlier that week, I’d finally pried it out of him that yes, that girl was his girlfriend, and yes, she had a name: Sally). A male student had come up to Blake and said something, and Blake had become violent. I asked which male student, but I already knew.
“His name is Sebastian,” said the principal.
I felt my throat tighten up, but I wanted to slow things down.
“Well, what did Sebastian say, specifically? I’m sure Blake didn’t just ‘become’ violent…” Nobody answered me. I turned to Blake. “What did he say to you?”
“He didn’t say it to me,” Blake muttered. “He said it to Sally.”
“Okay, what did he say to Sally?”
Blake looked away. “He said, ‘Hey Sally, why are you dating this fucking retard freak?’” Blake’s voice choked up as he said this, and I longed to take him in my arms and hold him.
The principal said Blake had punched Sebastian in the face so hard it knocked out two of his teeth. (I’ll admit, my first reaction was, good. I imagined that sneering boy’s teeth skittering along the cafeteria linoleum with a satisfying clickety-clack.) Sebastian then got up and tried to tackle Blake, but Blake grabbed his hand and forced it up and over the wrist, snapping it into “an unnatural position.” Sebastian fell to his knees, begging Blake to let go, but Blake grabbed hold of Sebastian’s ear and, in the principal’s words, “tore it like a piece of paper.” Sebastian fell down, bleeding from his mouth and ear, and Blake stood over him, holding the bloody chunk of ear in his face, yelling, “Who’s the freak now?! Who’s the freak now?!”
That’s when the school police officer arrived and put Blake in handcuffs.
I tried to remain calm, but I was shaking. I wanted to say something to show the principal that I had this under control, but all I got out was a wobbly, “You shouldn’t have done that, Son.”
“He shouldn’t have said that,” Blake replied.
Apparently, Sebastian was at the hospital, in surgery, and his parents wanted to press charges. The principal had convinced the police to let me take Blake home until we knew more. He said he’d need to have a formal meeting with me and my husband, attended by a lawyer for the school district, and that we should bring our own lawyer.
“I’ll need to know a lot more about what Blake is taking,” he said.
(Meaning, your drug. He needs to know what happens, long term, to kids who take your drug.)
“It’s just not right…a kid shouldn’t be able to do that to another kid,” the principal concluded in a gentle, pedantic tone, like we were discussing two toddlers who’d had a shoving match by the jungle gym, instead of a teenager missing an ear.
“He shouldn’t have said that,” Blake repeated, as though that were the final word on the subject and any further discussion would be a waste of time.
As we drove out of the school parking lot, kids were lining up for buses. They all stared at us, at Blake. I thought I saw Maggie’s face in the crowd, watching us go.
Blake was silent on the drive home, as I cried and pleaded with him to tell me why he would do this, why he would risk throwing away everything we’d worked for…
“Have you just been so angry all this time?” I asked. “Is that it, sweetheart? Have you just been so angry, and you never knew how to say it?”
But he wouldn’t answer me.
When we pulled into our driveway, Blake finally spoke.
“If Sally and I have a baby someday,” he said, “would the baby be…like I used to be, before? Or would it be like I am now?”
He was staring at me, intense. It took me a moment to understand what he was even asking. Finally, I said I didn’t know. He blinked.
“You didn’t think to ask them that question? Before you started me on this?”
I said I hadn’t. He just stared at me, in disbelief.
“How could you not ask them that?”
Blake got out, slamming the car door. He went to his room, shut the door, locked it.
I called my husband at work. His assistant said he was in a meeting. I said this was more important. She put me on hold, then came back on to say sorry, she had to take a message.
I hung up and poured a glass of wine.
And that’s when I called your support line. I was on hold for a long time, and the man who finally answered was clearly in another country, speaking stilted English from a corporate script. All I could get out of him was that no one would be able to talk to me until I filled out the six-month questionnaire. Only then would I get a call within five business days.
I said it’s an emergency, my son is covered in another kid’s blood, the police are involved, and all he calmly repeated to me (as though he’d had this conversation many times before) was, “It is company policy to review the six-month questionnaire before responding to any and all questions or concerns.” He added that I was technically late in submitting the six-month questionnaire. (Apparently, it was due last week.)
I couldn’t believe it. I hung up. Poured myself more wine. And started filling out the six-month questionnaire. This form. I figured I should tell you everything.
(Whoever “you” are, whoever’s reading this.)
My son is locked in his room, talking on the phone. I don’t know who he’s talking to. My husband still hasn’t called me back. He’ll come home late, see the look on my face, sigh, hold up his hand like, “Gimme a minute before you start bumming me out,” pour himself a big Scotch and then say, wearily, “Well, what did Gene get up to today?”
Bet he won’t see the ear part coming, though. (I’ll admit: I kind of can’t wait to see the look on his face when I tell him the ear part.)
Okay, I’m almost done with the questionnaire. And then I will click “Submit.” And then you will read it. And then you will call me and answer my questions and concerns. Okay? Because I have questions and concerns.
You know, it’s always sounded funny to me, the word “questionnaire.” When I was a kid, I thought it meant the same thing as “millionaire” or “billionaire,” but for questions. Like someone who was rich with questions, who never ran out of questions to ask. I remember telling my mother this and her cracking up. “Oh yes. That’s you, honey. You’re definitely a questionnaire.” I wish I could call her right now. She loved Blake so much. She knit him a baby blanket that is still on his bed to this day.
The strangest part of all this is that I’ve forgotten exactly what he used to look like. I can close my eyes and almost picture his face before. But it’s not exact. It’s not quite right.
The problem is, you’ve created a pill that turned our son into a different person.
But there’s no pill to turn us into the parents of that person.
Can you make a pill like that?
Please call me.
