The MacLean family lives in western Pennsylvania. In addition to their son Jacob, the MacLeans have a two year old daughter Emily Elizabeth. Recalling some of their struggles with epilepsy can be a painful process for the MacLean family but they are committed to helping as many other families as possible by sharing their story.
“I feel like it’s imperative that as parents we do everything possible to educate ouselves and other people about epilepsy,” says Theresa. “And, I think it’s important for us to help the EFWCP so that they can help even more families. Sometimes just hearing another family’s story is encouraging. I hope that others hear our story and feel empowered and know that they too can take control and get back to enjoying their children and enjoying family life.”
Just shy of his first birthday, tiny Jacob MacLean’s body went rigid in his mother’s arms. The 15-second seizure seemed like an eternity, recalls Jacob’s mother Theresa, and the fallout would get much worse before it got better.
“I felt as though someone had stolen away my perfect baby and handed me a new one,” she said. “And one I knew nothing about, and certainly could not begin to even take care of.”
Within three days of his first seizure, an ambulance was transporting the youngster to Pittsburgh Children’s Hospital. A 15-second seizure had turned into 10 minutes.
“The doctor explained Jacob had epilepsy and there was no cure,” said Theresa. ’We were devastated.”
The MacLeans have visited several different specialists in different states over the years. Jacob has endured numerous tests to identify the cause of his seizures and has sometimes struggled to find a medication that will work to control his seizures.
“We’ve learned to enjoy the periods of time when Jacob’s seizures seem to be under control,” says Theresa. “It really helps to talk with other parents and to know that you aren’t alone in this struggle.”
The stark realities of a disorder which affects 2.5 million Americans — 60,000 in western and central Pennsylvania — would continue to hit home over the ensuing months. Jacob continued to suffer seizures every three minutes every day and night, each lasting between 15 and 30 seconds.
“I spent days and nights — tears streaming down my face — just holding him and wondering how on earth I would find the strength to help this tiny baby through,” she said. “And then it hit me. Tears were not helping, but smiles and normalcy would.”
Her change in mindset, admits Theresa, proved to be a valuable turning point in the care of Jacob. Anger, frustration, even pity were replaced with newfound hope and optimism.
MacLean and her husband quizzed doctors, read as much as they could about the disorder, attended numerous seminars, and became actively involved with the Epilepsy Foundation Western/Central Pennsylvania (EFWCP). The EFWCP sent a lot of information to the MacLean family and also sent a staff person to Jacob’s pre-school to educate the teachers, principal, and secretary about epilepsy/seizure disorders; this provided both mom and school staff with peace of mind should a seizure occur while Jacob was at school. The EFWCP staff continue to help out with education for the teachers and school, visiting with Theresa each year to discuss Jacob’s seizures and what to do in the event Jacob would have a seizure while in the classroom.
Jacob, now six years old, has begun making positive strides in his battle with epilepsy. Tegratol three times a day has kept Jacob’s seizures to just one a night — none during the day.
Recently, Children’s Hospital of Pittsburgh discovered and Johns Hopkins confirmed that Jacob has an inoperable lesion on his brain where the seizure activity is; it could exist from birth, or be scar tissue from the recurring seizures. Jacob has amazing strength — no developmental problems have surfaced, and he’s doing things all six year olds do. This fact lends confidence for Dave and Theresa MacLean that Jacob will lead a productive life.
“Jacob has become our hero. He is the most bright, wonderful, intelligent child you could ever imagine.”
Despite their struggles with epilepsy, the MacLean family has grown and Jacob now has a two year old little sister, Emily Elizabeth. “Emily just loves her big brother,” says Dave. “And he’s a great big brother.”
Theresa MacLean is now a member of the EFWCP Policy Board of Directors.
“I know that every family won’t have time to become as involved as we are with the Epilepsy Foundation Western/Central Pennsylvania but I want other parents to know that there’s a wealth of information available to them via other families. I’ve learned so much from spending time with other moms and it’s important for families to know that there is a network of information and support out there to help them on their journey with epilepsy,” said Theresa.
Theresa became chairperson of the EFWCP’s Parent Advisory Committee several years ago and spoke at the Foundation’s 5th Annual Conference on Epilepsy. She has also become an education ambassador and shares her family story about Jacob and epilepsy with local organizations as a guest speaker.
Theresa, her husband Dave and their entire family support the Pirate Family Run/Walk for Epilepsy each year. “It’s a great way to educate people and to raise money to support the important work of the EFWCP,” says Dave MacLean. “We really enjoy participating in the Pirate Run/Walk for Epilepsy and it’s the kind of event that an entire family can attend.”