Hello, we are Marla and Ron Chapleau and we have 3 children, all of whom are adults now.
It is our middle child, Aidan, born in 1998, that is affected by MLC1 and like most of us, we didn’t know it at first. The United Leukodystrophy Foundation (ULF) proved to be very useful for us, especially in those early days as we searched for answers and looked for help to navigate the new world we had entered. They played a pivotal role in connecting us with Dr. Marjo van der Knaap and eventually a diagnosis.
We have gone through heartache, worry, and grief as we asked ourselves “Why?”. Then we asked ourselves “What now?” We decided the best course of action was to provide Aidan, and his siblings, with as normal a life as was possible. As such, Aidan participated in physical activities like swimming, biking and even organized soccer at one point in time to strengthen/maintain his muscles and core strength. We also understood that social activities were also very important so we had Aidan participate in Beavers and then Cub Scouts.
Though we tried everything in our power to slow down or stop this disease, it ultimately did continue to progress and we went through another learning curve as Aidan began to have seizures following trauma to his head such as from a fall. Each seizure appeared to permanently worsen his ability a notch. By the age of 7, a wheelchair became a necessity which was also a blessing in some ways as it put an end to his falls.
The next major concern that we encountered was his risk of choking as his swallowing reflex became more and more impaired. Thankfully we hired someone to give the family a First Aid lesson which proved to be literally a “life-saver” on more than one occasion. Aidan now has a G-tube and it is used to deliver him his medications, keep him hydrated and to supplement his diet as he still receives most of his calories via eating.
Aidan has taught us so much in our journey. He has a smile that can light up a room. He has also taught us patience and the need to slow down in life. Aidan has found ways to manage his new world on his own. When his legs became more unstable, he began to crawl around the house as he found this a much safer way to move around. When his hand control continued to worsen, he discovered on his own that his nose can be used on his iPad to touch the various options on the screen. His resilience is inspiring.
The effect of having a special needs child in our family has also had a major impact on our other children too. Our daughter, Alexandra, grew up very quickly and often played a protective role when it came to her brothers. She attended a ULF conference with me when she was young and it impacted her tremendously. This led to her involvement in Easter Seals (a camp for physically disabled children) and a passion to help in the fight against neurodegenerative diseases. She is currently a PhD student in Neuroscience. You can also see the influence Aidan has had on our youngest child, Liam. He is an exceptionally kind, caring and compassionate person. Having graduated with a degree in Commerce he is currently aiding the ULF in updating their social media presence and helping the organization embrace the world of digital marketing. Our shared experience has resulted in an extremely tight-knit family.