Being a mom is hard work, especially when your child has special needs. Rebecca Lee, of Bath Township, doesn’t mind the extra effort at all. After suffering through the shock and pain of losing her first child shortly after birth, she says she especially appreciates the opportunity to be a mother to 7-year-old Jack and 2-year-old Maryann.
It hasn’t been an easy journey. Formerly a 10th grade English teacher at Highland High School, Becky had experienced a typical pregnancy with Jack until he came 8 weeks early. Jack was mysteriously immobile for the first 18 months of his life. He couldn’t eat, walk or talk. And, he had trouble breathing. Nobody was really sure why despite a 10-week stay in the Neonatal Intensive Care Unit (NICU) for testing and observation.
“I pretty much never left the house except to go to doctors’ appointments for about 2 years,” said Becky. “Jack didn’t even have the muscle strength to sit up in his car seat. And, we didn’t want him to catch any viruses, because colds and flu are so difficult for him to manage. So I just stayed home with him.”
Finally a turning point came for Rebecca and her husband, Paul, when Pediatric Neurologist Dr. Bruce Cohen, director of the NeuroDevelopmental Science Center, discovered Jack has a rare muscular disorder called congenital myasthenia syndrome (CMS).
“Dr. Cohen explained to us there’s a medicine for CMS called Mestinon, but it only works for some patients with that diagnosis,” said Rebecca. “Jack tried the medicine while being observed in the Akron Children’s Emergency Department.”
Almost immediately, amazing results were realized. Jack was able to turn over in his bed after only 30 minutes on the new medicine!
Jack now takes medicine every 4 hours and has made an amazing turnaround. He attends first grade at Richfield Elementary School where he is a math whiz who can recite 120 digits of Pi from memory. He has a wonderful sense of humor and likes to make people laugh at his witty jokes.
With his parents help and support, Jack is working hard to attain and surpass all the milestones he missed when he was immobile. Not only does he participate in weekly speech, occupational and physical therapies, Rebecca is always looking for additional ways to help him grow. He takes therapeutic horseback riding, taekwondo and attends summer camp.
Rebecca says she especially loves helping other families going through tough times at the hospital, sharing her experiences and acting as a parent mentor and serving on the Family Action Collaborative Teams (FACT groups) for the NICU and PICU (pediatric Intensive care unit). Through these experiences, she has become particularly close to another local family who has a child with CMS.
“It is always wonderful to have someone who’s been there to talk to, so I know our families really appreciate it when Rebecca makes herself available to have conversations and share her knowledge,” said Marybeth Fry, NICU family care coordinator. “She has a gentleness, a sincere kindness about her.”
Rebecca and her husband Paul have since added to the family. Maryann was born 2 years ago and also has CMS. It is a recessive condition, so each of the Lees’ children had a 25% chance of inheriting it. All 3 of their children got it. But Maryann has been taking the medication since the first day of her life and is developing like a normal 2 year old. While she still needs therapies to keep her development at a typical pace, she’s thriving.
“Rebecca is an amazing person first and foremost, but certainly an equally-amazing mother,” said Lisa Gonidakis, Jack and Maryann’s speech pathologist at Akron Children’s Hospital. “While her journey of motherhood has been far from easy, her positive attitude and poise are inspiring.”
Gonidakis says she especially admires Rebecca’s commitment to helping her children succeed.
“She not only attends Jack and Maryann’s therapy sessions, but she participates with an inquisitive and engaged approach,” said Gonidakis. “Despite the kids’ medical and physical challenges, Rebecca enriches her kids’ lives by seeking fun learning opportunities within the community – such as social skills groups, zoos and farms, charity events and holiday activities. She goes above and beyond in everything she does for those kids.”
All of this effort is apparent as the Lee children continue to meet goal after goal and exceed everyone’s expectations.
“When I think back to where he was when I first met him, it’s amazing to see how far he’s come,” explains Gonidakis. “At age 2, he was working on holding his head up and projecting his voice, putting sounds and syllables together, and using sign language to clarify. He has always had great attention to books, picture cards, and puzzles and has always been very cooperative even with challenging tasks.
“Five years later, now at age 7, Jack speaks clearly in sentences and is learning to maintain a conversation,” said Gonidakis. “His orofacial muscles are much stronger now, as are his respiratory muscles for breath support. His memory and number sense are well above his age, and he has been reading since age 3. He has come a long way and is intrinsically motivated to meet his goals!”
So if you are looking for inspiration this Mother’s Day, look no further than Rebecca.
“Rebecca is a wonderful example of what we all aspire to achieve in motherhood – constant unwavering hope. Her consistent support of her children Jack and Maryann has been present and continues to be present each and every day throughout their journey,” said Katie Kapper Brooks, supervisor of physical therapy. “While all mothers have hope for their children’s success, Rebecca’s hope for Jack and Maryann along with her positive advocacy has ensured the medical team got to the bottom of their needs. I remain in awe of Rebecca’s strong, quiet and unwavering support of her children. She is a true example of what we all aspire to be as mothers.”