Isaac and Jakob’s Story

Caring for a child with a physical disability often requires an extra measure of support and attention. Imagine how many hours you might spend at medical appointments, working through physiotherapy exercises at home, advocating for educational needs at school, assisting with mobility – from chair transfers to navigating stairs, searching for inclusive programming, and arranging or providing specialized transportation. Doing all of this and more just to ensure your child has the support they need to thrive and experience life to the fullest. Now imagine doubling that effort for twins who share the same condition.

Isaac and Jakob are 19-year-old bright and active twin brothers. They were born premature with a metabolic condition that affects their blood sugar levels. The condition went undetected initially, leading to a frightening situation where Isaac suffered a seizure at just a few weeks home from the hospital. After further testing, it was discovered that the boys had experienced a brain bleed, and both were eventually diagnosed with cerebral palsy.

With a twinset of complex medical conditions, Janet, Isaac and Jakob’s mom, began to learn the labyrinth of caring for children with physical disabilities – facing each challenge with love, resilience, and determination. Janet reflects on the whirlwind that was managing the boys’ schedule growing up, “There were lots of appointments for physio and occupational therapy. Sometimes bi-weekly, sometimes weekly, but it felt like daily between the two of them. And then they give you exercises for each, ‘Do this with this one and that for that one,’ … and then it’s like ‘Ok, now I need physio!’” Janet, like any Easter Seals parent, is happy to do whatever it takes to give her kids the best life possible. But she also acknowledges the toll that caregiving can take, sharing that she has developed carpal tunnel syndrome in her wrist from the years of providing physical support.

Thankfully, through the generosity of Easter Seals donors, Janet has been able to get the boys many important pieces of mobility and accessibility equipment to help with the physical care and support at home. Most recently, she has been able to receive funding for a portable lift that helps transfer the boys out of their wheelchairs and onto the commode, massage table, and so on. It is a huge help for Janet to have this type of lift, as she explains, “They both weigh more than me and they’re taller than me. So if we didn’t have this lift, I don’t know how I would move them.”

In addition to the portable lift, Easter Seals donors have also been able to help provide funding for a toileting system, a track lift system, commode chairs, transfer disc, grab bars, track and sling, and even a power wheelchair for Jakob. The power wheelchair has the ability to convert to a standing position, which has been especially helpful these last few weeks as Jakob has been stuck at the computer taking an intensive math course. Janet further explains the impact of the chair, sharing, “The chair has given Jakob the opportunity to advance and be more independent. The chair stands for him, and it reclines so nobody has to transfer him back and forth when his back or legs hurt, or he wants to stretch. The chair raises him up to the shelf when he needs to reach something. The chair does almost everything for him!” The cost of Jakob’s wheelchair was over $40,000. While there was government funding available for a portion of the cost, Janet explains that essential items, like the footrests, were not covered and she was left trying to piece thousands of dollars together in order to get Jakob the equipment that would empower him to live a fuller life.

“Our family is so grateful to Easter Seals,” Janet shares. She believes that the power wheelchair has been a huge factor in helping Jakob develop the independence that he needs to embark on the next big chapter of his life – entering university to begin a degree in economics.

Every donation, big or small, contributes to life-changing equipment and resources for families like Isaac and Jakob’s. Easter Seals donors are often the lifeline for families navigating the complexities of caring for children with disabilities. Your support helps bridge the funding gap when government funding falls short and gives hope when families feel overwhelmed. Thank you for choosing to be part of these incredible stories, for believing in the mission of Easter Seals, and for making a difference in the lives of countless individuals. Together, we can help provide more opportunities for children and youth with physical disabilities to reach for the stars, just like Jakob and Isaac.