Nicole and Chuck met in 2016 and quickly fell in love, they got married and had two wonderful children, with a third on the way. Chuck worked as an accountant and Nicole worked at Biogen supporting treatment access for people living with rare diseases. She had always been passionate about her career and proud to work for a company committed to advancing research in rare diseases. Although, she never imagined she would be among the caregiver community, following the science from an entirely new and devastating perspective.
Diagnostic Journey:
After finding out that Nicole was pregnant with their third baby in September 2023, they decided that Chuck would become a stay-at-home father after the baby was born. But when creeping health issues started to become more noticeable – hand tremors, sudden weight-loss, fatigue and muscle fasciculations – Chuck and Nicole shifted their priorities and unknowingly began Chuck's diagnosis journey to Amyotrophic Lateral Sclerosis (ALS).
Through many obstacles, and after multiple specialties and tests, and many stressful weeks of suggestions of what might be affecting Chuck’s health, they were given the news in February 2024. Chuck was officially diagnosed with limb-onset, sporadic ALS at the age of 38 years old. Given Nicole’s experience at Biogen in the neuromuscular field, she was always aware that this could be a possibility, but the official diagnosis was still devastating and completely life-altering.
“Our lives as we knew it were officially turned upside down. We were faced with learning, adapting, and embracing our ‘new normal’ of living with a life-threatening neurological disease” explained Nicole.
Our New Normal:
During the uncertainty of the diagnostic journey, they started to realize that Chuck may not be able to be the stay-at-home dad he originally envisioned. So, they had proactively started to look into alternative childcare options as they knew that extra help would be needed for three kids under five. By the time Nicole gave birth and began her maternity leave, Chuck had already become wheelchair dependent and non-ambulatory. “Each day and every week we demonstrate determination and active problem-solving to face the realities of living with ALS, between the current limitations and anticipating the future ones,” said Nicole.
Throughout the turmoil, the whole family is continuing to learn and to prepare for the challenges ahead with resilience and hope for the future. Nicole and Chuck have created their new normal, they've renovated their house to a single floor living situation and have a large rotating schedule of caregivers to support their core family of five.
