My name is Édith and my son, Felix-Antoine, has Hunter Syndrome (MPS II). Since many years now, the Canadian MPS Society has helped me connect with other families who has been living the same reality. For example, we attended the Family Conference in Montreal in 2017, and the latest one in Calgary (last July). Moreover, we got the financial support from the society to attend those conference which was is really helpful and lessen the burden of traveling. These conferences were unforgettable opportunities to meet in person, learn about the disease and the treatments, and to share heart to heart what we have been going through. We will never accept Félix-Antoine’s disease, but we are learning to live with.
I am thankful to the Society to support families like mine, and to offer me opportunities to share and be listened, especially during those We Care sessions, where we regroup and talk amongst ourselves, members of a new family.