Rare Disease Foundation parent group share paddle with families

There is a special group of parents in Victoria that meet once a month, supported by the Rare Disease Foundation based in Vancouver. With branches across Canada, the Parent 2 Parent Resource Network was developed for parents that have kids with rare diseases. It was found that when a group of parents sat around the same table, a similar diagnosis was not the binding factor but rather the shared experiences.

The rare world can be an isolating place so these connections are vital to help parents to not feel so alone in their journey, share resources, and learn from guest speakers.

Power To Be was invited to come and speak to our group about what they do for our community which is very applicable to our families. The parents loved what they heard and we decided right then and there that we would organize a canoe program with Power To Be for our rare disease families.

Almost 40 of us gathered at Power To Be’s Prospect Lake site to take turns canoeing in their Langley voyageur 14-person canoe. Because our group is so diverse in terms of the wide range of abilities, Power To Be had to think outside the box in order to accommodate everyone in the canoe. They went above and beyond to make sure the canoe was ultra stable so that everyone felt safe. Thanks to the determination of the group, and the creativity of Power To Be’s staff, participants who used a range of equipment such as BiPAP machines and wheelchairs were able to join in the activity. For some, it was the first time they got to experience canoeing, a memory made even better as their family members were by their sides.

Not only was canoeing on the beautiful Prospect Lake stunning, even with the rain coming and going, but being on that piece of land feels healing and I think everyone felt that. It was a rare opportunity for our families to come together, connect and have fun. I couldn’t think of a more spectacular venue to do that.

Thank you to Power To Be for providing these kids, their siblings and parents an opportunity to connect with nature and do an activity that they would normally not be able to do. These are the moments that leave a lasting impression and memories to cherish.

 – Story shared by Lisa Bosdet, Victoria Parent 2 Parent Resource Network founder and Power To Be Administrative Assistant