When my son Elovic was diagnosed with MPS at age 3, I was in shock. It felt like my world was tearing at the seams. I was faced with so many unknowns and I wasn’t certain how to deal with everything that was being sent my way.
That’s when I reached out to the Canadian MPS society. Having them by my side was an immense relief. It helped not only knowing more about the disease itself but also in making decisions before deadlines were past due. The MPS society helped me understand the numerous clinical studies underway at the time and where to look for them and connected me with the doctor who was leading one of these clinical studies.
Thanks to the Canadian MPS society, I was able to make an enlightened decision with which I was comfortable. This was such a pivotal moment for us. In a situation where we felt like everything was falling apart and we had no control whatsoever, it was empowering to regain control of those decisions and act upon them.
Elovic received his first dose in the clinical study just before the eligibility deadline. I remain convinced that without the Canadian MPS society I never would have been able to navigate the labyrinth of researching and understanding possible options. The Canadian MPS society means so much to us. They allowed us to get information, support, network with other families and so much more. I am so thankful for everything they do. It means so much to our family.