Those who know Kaleigh Pedroso now – as a fifth-grader at The Grace School at Meeting Street, and co-host of their upcoming telethon on Jan. 24 – may not realize the long road she’s endured and the obstacles she’s overcome.
“When she was born, they had no idea that anything was wrong with her chromosonally,” said Kaleigh’s mother, Kerry. “All throughout my pregnancy, though, I just had this feeling. I don’t know why, but I kept telling my husband that something was wrong with this baby.”
At 6 pounds, 3 ounces, Kaleigh was taken to the NICU at birth for a collapsed lung. She spent her first 24 hours there.
“We brought her home and she couldn’t eat. I would be up 24 hours a day trying to squeeze a bottle into her, and she just couldn’t eat. At one point when she was hospitalized again, they characterized her as ‘failure to thrive,’ and I felt like I was a failure, and yet I knew I’d spent 24 hours a day trying to get her to eat,” said Kerry. “To this day, she still can’t chew. We have to puree everything and she’s sensitive to even the smallest chunks of food.”
As the parents of an already 3-year-old daughter, Keara, who is now almost 16, Kerry and her husband Elias knew that something wasn’t right.
“We took her back in and they began testing her for one thing after another. Every time, I kept saying, ‘That isn’t it, that isn’t it,’” Kerry said. “Finally, at eight months, on Aug. 26, a date I’ll never, ever forget, they stumbled upon it. Someone at Women & Infants’, to whom I’ll be forever grateful, tested her blood for Turner syndrome, and while doing so they took it one step further, doing some additional testing with her blood, and it came back that the fourth chromosome was missing.”
Kaleigh was diagnosed with Wolf-Hirschhorn syndrome, or 4p syndrome, as it is sometimes more commonly known.
According to the website wolfhirschhorn.org, the syndrome “refers to a condition that is caused by a missing part [deletion] of the short arm of chromosome 4. This missing genetic material results in severe developmental delays, a characteristic facial appearance, and may include a variety of other birth defects.”
The Pedroso family had their diagnosis, but the long road for their family was just beginning as they started searching out answers and resources to help their daughter.
“We were told she might not make it to her first birthday,” Kerry said. “She couldn’t see. At first, I knew she couldn’t see because she wasn’t tracking. I would get in front of her face and she wouldn’t react, but I didn’t say anything. Sometimes, if you don’t say it out loud, you think it isn’t real.”
During Kaleigh’s appointment at Boston Children’s Hospital at three months of age, however, it quickly became real, when the doctor there confirmed to Kerry and Elias that their daughter couldn’t see.
“Her vision finally kicked in at four months, that’s how delayed she is,” Kerry said. “She still has vision problems. She had surgery at three years old because her eyes were fixed to the right and they had to snip the tendons underneath to fix it.”
Kaleigh and her family navigated through years of health problems, including gastronomy tubes and supplemental feeds, open heart surgeries and more, but there were other roadblocks to get past developmentally for Kaleigh as well.
Kerry credits Meeting Street and the “saints” who work with her daughter at The Grace School with helping the Pedroso family, but especially Kaleigh herself, navigate through those challenges.
“Once you’re thrown into this situation, you have to find your resources. If you look on the Internet, there is just gloom and doom all over, so you have to get your information elsewhere. We had Early Intervention, we had our pediatrician, and they were wonderful helping us know what we needed to know, helping us to find the resources we needed,” Kerry said. “At three years old, we started at Meeting Street School. She couldn’t walk, she’d scooch everywhere and she said nothing at all. The first time I arrived to pick her up from school and her physical therapist said to her, ‘Kaleigh, do you want to show mom what you can do,’ I almost lost it as she walked all by herself with her walker to me. It was the best day, the best memory, ever. Now she has braces on her feet, but she goes all over.”
The Grace School at Meeting Street is now Kaleigh’s school, and the Pedroso family couldn’t be more thrilled with the progress she’s made there over the years. A fully inclusive school that enrolls a third of its students from school district referrals for special needs and two-thirds of their regular education students through an application process, the school is what Director Margaret Knowlton calls one of the best-kept secrets around.
“Eighty-five percent of our students are students without IEPs, meeting or exceeding the reading benchmarks,” Knowlton said. “We accept families from any school district, and our class sizes are approximately 15 students to two teachers, one being a special educator and one being a regular educator. Depending on the special needs in the classroom, we might also have teacher assistants present, so the students are all getting very individualized attention. Many people don’t realize that our student population consists of more ‘typically developing’ students than it does special needs students.”
The school year at The Grace School follows a similar calendar to other school districts, although The Grace School hosts approximately 11 professional development opportunities per school year for their educators, therapists and other staff members in order to provide them with the most current training and educational practices available. It is those types of practices and opportunities that have benefited students like Kaleigh Pedroso.
“We have Smart Boards in every classroom. We have a goal of having one iPad for each student, which we’re working towards now. We have at least two standalone computers in every classroom and we use and integrate technology into our curriculum on a daily basis,” Knowlton said. “The students all benefit from a 90-minute library/technology block per week, and they all have two 30-minute physical education classes per week, 45-minute art and 45-minute music classes per week as well as a daily 30-minute recess, usually outdoors. Grades two through five can take advantage of our drama program and our chorus program, both of which are included in tuition.”
“We’re hoping that with the new rules and regulations, Kaleigh will be able to stay at Meeting Street through age 23,” Kerry said. “She’s a fighter and she’s overcome so much. Her receptive language skills are at 100 percent. She knows everything, but she struggles with expressing it, although everyone who knows her knows exactly what she wants, when she wants it. She’s very close to her sisters, Keara and Kyla, who is six, and we treat her just the same as we treat them. If she’s being fresh, I tell her she’s being fresh. I’m just happy inside, though, that she’s able to be fresh.”
According to Knowlton, The Grace School will be expanding one grade per year over the next three years, with a sixth grade being added in next year, and a seventh and eighth being added in for each of the following two years, completing the middle school grades.
“We have such a wide range of needs here, from severe and profound and students with multiple handicaps, to those without such profound needs, that it creates a very diverse, caring environment,” Knowlton said. “Having a population which is fully inclusive allows The Grace School to raise and educate all students and to create a population of caring, compassionate and respectful students.”
For more information about Meeting Street and to see Kaleigh Pedroso in action, tune into the school’s annual Telethon on WPRI Channel 12 on Jan. 24 from 7 p.m. to 11 p.m. and visit the school’s website, www.meetingstreet.org.