Hopkinton’s Hannah Pessin, 15, was born with cerebral palsy, a group of disorders that affect a person’s ability to move and maintain balance and posture. Her mom, Rebecca, shares her story with JewishBoston.

Our daughter, Hannah, is a twin, and she was born with a rare genetic skin condition called Incontinentia Pigmenti. She also had a stroke in utero, so she was born with mild cerebral palsy. She had left-side weakness. We didn’t really notice it at first, because she would tuck her arm in, and she was just so cute. But then as we started doing things like jumping in the jumper with her twin, Jordan, she would go to one side much more. And then we started early intervention at 6 months old. We obviously knew at that point, and she did really well. She wore a brace since she started walking and because her foot would really turn in. She walked on the ball of her foot. She would often hold her left arm in a prone position.

Hannah used to get injections of Botox in her arm, her leg and her foot to relax the muscles. And then we made a decision before she went to fourth grade. We saw a really good doctor, Benjamin Shore, at Boston Children’s Hospital. He works with cerebral palsy patients, and he said it was the prime time at her age to have some surgery done. So we made the tough decision to have multiple surgeries. She had her hips broken and set with pins. She had her hamstrings lengthened. She had her tendons lengthened, as well as having a tendon wrap around her foot to turn it out in the other direction. It was six hours of surgery.

Hannah was in the hospital for a week, and then she came home with casts. Both of her legs were in total casts. She had a wedge between her legs. We had to move a hospital bed into the study, and she was like that for two months. She had to learn to walk again, and then two years later, we took the pins out. Now she has a little bit of a gait problem, but her feet totally turn out. Her hips are fine. She was going to have hip problems as she went into puberty; that’s why we had to do it when we did. It was a long haul. She was tough as nails, and now, she’s pretty amazing. You can tell she has a little skip to her step. Other than that, most people wouldn’t even notice at this point.

Hannah’s cerebral palsy is mild. We’ve been in and out of hospitals a lot, in other doctors’ appointments her entire life, casts, braces, everything. And you see other kids there who have it so much worse, and that just breaks your heart.

She also has mild autism, which they think is due to a brain bleed as well, but who knows for sure. She was diagnosed with autism around age 2. And again, we’ve been in early intervention. She’s been through integrated preschools, with a lot of behavior issues, but now she’s a sophomore in high school. She has an aide who travels with her, but she goes to general ed classes. She gets all As and Bs.

It was interesting because Hannah’s twin, Jordan, was born with a heart murmur, and he had breathing issues. We were really worried about him. We didn’t even realize there was anything wrong with Hannah. But like I said, she didn’t sit up on time. She didn’t walk until she was almost 2. We had therapists in and out.

It’s tough on the family; it’s tough on her siblings because she is quirky and a little awkward, and she can trip a lot. But I think they’ve all grown a lot having her as a sibling. My oldest, Benjamin, is at Arizona State. Jordan is also a sophomore. And Sarah is in seventh grade; she just turned 13. I have four teenagers right now!

As a parent, it’s been more difficult because Hannah demanded and needed a lot more attention than the other children. It’s hard; when you have “typical” kids and then one who’s not, the typical kids can get left behind, so that’s always a challenge. I’d always tuck them into bed, talking, and just make sure they felt special too, and I spent special time with them as well as with Hannah. Each kid has to have a little bit of time with mom and dad.

For other parents, I would say: Get help early, and get all the help you can get—anything they offer you. And if you have to advocate, advocate. We live in Hopkinton; we moved to this town because of the special ed, and it’s been phenomenal. I’ve never had to go through an [Individualized Education Program] meeting without feeling like I wasn’t heard. I was always heard; they were always offering more help. And it’s been a wonderful experience.

Other parents aren’t so fortunate, and they have to really advocate for their kids. You know, I’ve had my things—I’ve had to have Hannah’s bus stop changed, and every now and then fight for an after-school program when they weren’t offering it to special ed kids because they didn’t have aides to do it. So there’s been bumps in the road.

We also had Hannah in applied behavior analysis, where she had to learn to do un-preferred things. Things like certain commercials would send her screaming, banging her ears behind a chair. All of these behaviors had to be unlearned, and it was challenging, as well as her physical disabilities, all the surgeries she had to have, all the Botox, in and out of the hospital. It was a long road. But she’s doing great.

You have to look for help. When we found out Hannah had cerebral palsy, my doctor got me in touch with early intervention. Every day we’d have at least one person in, working with her for a period of time. And then once they get to age 3, the state, at least in Massachusetts, is required to get them into integrated preschool, where they’re with typical kids. There are some special needs kids, and there are also typical kids; she started at age 3 and was in that program for two years, with services.

Today, Hannah wants to be a graphic artist. She’s an amazing artist. She’s super smart. I mean, she memorizes books! From the time she was young, she was asking for dictionaries and thesauruses, and a Spanish dictionary, and she memorized her Hebrew so much that she was correcting the rabbi during her bat mitzvah. It was great! She’s amazing, her memory. She can tell you any song, what year it charted, where it charted and where the band’s from because she memorized a four-inch rock-and-roll book.

The Jewish Family Workshop was great with her [bat mitzvah] classes, making sure she had a special aide and special time with the rabbi, Saul Goodman. He was just fantastic, because a lot of times she didn’t want to do her Hebrew and he’d be on the phone with her and say, “Come on, Hannah, you know you can do this!” It’s been a great support system, and definitely the faith and family helps a lot.

World Cerebral Palsy Day is Sunday, Oct. 6. Find resources here.