Neil’s Story

Meet Neil, an 18-year-old whose unbeatable sense of humour and vivid imagination light up the lives of everyone around him. With passions including history, Harry Potter, the Toronto Blue Jays, and the Montreal Canadiens, Neil brings a level of enthusiasm and joy to life that draws people in, leaving a lasting impact on anyone lucky enough to meet him.

Neil’s development was quite typical throughout his early childhood. As an athletic boy, he was a standout player on his baseball team growing up. As Neil reached age nine, however, he began to exhibit some alarming symptoms, beginning with seizures. Initially, it was assumed that Neil was epileptic. As time passed, additional symptoms appeared with Neil beginning to experience difficulties with his balance, which prompted further investigation. Through a series of genetic tests, Neil was diagnosed at age 10 with CLN2 Batten Disease, a rare, progressive neurological and metabolic condition akin to ALS and Alzheimer’s. Neil and his parents’ worlds changed forever.

Despite the gravity of the diagnosis, there was a silver lining—Neil had shown symptoms much later than most children with CLN2, allowing him to maintain his abilities longer. Another glimmer of hope arrived in the form of treatment, with Neil notably being the first child in Canada to receive treatment for CLN2. Though the treatment has been highly effective in slowing the progression of Neil’s condition, his mom, Leah, notes, “it’s not a cure, unfortunately.” Prior to treatment becoming available in Canada, accessing it presented substantial challenges to Neil and his family, who were required to travel to Ohio every two weeks for Neil to receive treatment. Ultimately, the treatment arrived in Canada – a life-changing development for Neil and his family.

Despite treatment, Neil has experienced a gradual decline in many of his faculties, including his ability to walk and swallow. Neil’s mom explains the progression of the condition, “they do go blind, the ability to swallow the ability to communicate, to talk, it just shuts down pretty much all of their faculties that way.” Leah continues, “This is where Easter Seals has really helped us,” explaining, “One of the qualifiers for the treatment is that he has to be able to walk six steps unaided. The Rifton Gait Trainer, which you helped us fund, has been crucial. His ability to continue to walk and move has helped us qualify to keep the treatment ongoing.” As Neil’s needs have grown, not only has mobility equipment helped Neil access treatment, but it has also provided him with greater safety and independence in his day-to-day life. Over the years, the Easter Seals Equipment Funding Program has helped Neil and his family with the cost of a walker, a transfer aid, several wheelchairs, as well as a van lift, portable lift, bath lift, and stair lift – all crucial pieces of equipment that allow for Neil and his parents to experience greater safety and freedom in their lives.

Leah communicates the impact the Easter Seals Equipment Funding Program has had on their family’s life, sharing, “If we didn’t have the stair-climber, we literally couldn’t get Neil outside, we couldn’t get him to school, we couldn’t get him out into the community, he couldn’t leave the house,” continuing, “Families like ours, who use the maximum capacity that Easter Seals can give us, there’s a reason we use it. Our life has been so impacted by a disease or by a condition, there’s no way we could parent him and there’s no way we could keep him happy, healthy and safe if we didn’t have what Easter Seals gives to us.”

Leah shares that the arrival of a new piece of equipment always seems to stir up bitter-sweet emotions, in some ways marking milestones along the progression of the disease. However, she shares how an Occupational Therapist at Neil’s school helped her to begin shifting her mindset when he first began using a walker, “I was lamenting ‘It’s just so hard to see him using a walker,’ and she helped me see it in a different way. She said, ‘But the freedom that he now has, and the comfort he now has walking down the hall has been so improved. Before he was afraid of tripping and afraid of not being able to have a wall to hold on to. He’s got freedom and mobility now.’” Leah shares how she has held onto these important words, “I had to shift my mind frame with that, you know, I really had to see it in a different way. So I’ve been really trying to do that as time goes on.”

The great sense of humour that Leah shares with her son has helped her along the way. She laughs, disclosing how people who are regular guests in their home have grown accustomed to occasionally being offered a seat on Neil’s commode due to their minimal furniture – a necessary design choice due to the sheer number of equipment items that fill their house. She quickly follows up to clarify that Neil’s commode is not used for its standard purpose but instead as an aid for Neil moving around the house. For Leah and her family, humour, imagination and the ability to find the light in any situation have truly been a blessing.

As Neil’s dementia symptoms have begun to set in, Leah has found solace in the fact that his imaginative mind has resulted in the symptoms taking the unique form of magical thinking. “He believes he’s friends with Harry Potter and thinks he’s a wizard. He’ll wake up and say he fought Dementors. It’s incredible. We let him go with it. If dementia shows up this way, it’s the best way. He’s happy and content.” Though Leah watches Neil’s peers graduate high school and move on to live independent lives with an undeniable feeling of sadness, she is comforted by Neil’s pure and ever-loving presence. “He still wants hugs from mom, you know, every single day he’s asking. And my friends are like, ‘Wow, if I can just get my kid to even stop for a hug. I’d be so happy.’ You know, I can see the blessing in that still. Yeah.” She continues, “He’s never going to know about the harshness of this world, you know what I mean? He’s never going to have a broken heart and he’s never going to be hurt by another person. And that is one thing.”

Despite the chaos of his disease, Neil’s happiness and imaginative spirit bring a sense of peace and inspiration to his family. “He’s a very happy child, which makes life peaceful amidst the chaos of this disease,” Leah shares, “He’s got that sparkle in him and he attracts people and we’ve been blessed with that, you know, we’ve been told by a lot of people that he impacts their life greatly. And it’s not just because he’s got Batten disease, I think it’s because of the person that he is.”

Leah expresses her deep appreciation for the Easter Seals donors who have helped make it possible for her to ensure Neil is safe and living his best life, sharing, “If we didn’t have the things that we have, we’d still make it work one way or the other. If we didn’t have a stair climber, we’d still make it work. But it would be Neil sitting on his bum, going downstairs, which is not safe. Families like ours would make things work, but it would often cause more harm than good. So, the equipment that Easter Seals funds for us ensures that we keep him completely safe and living his best life.”