Pour les parents

“As long as there are other retinal diseases without a cure, we just can’t stop. As a PRRF board member and leader of the Family Advisory Committee, I want to make sure any parent experiencing a diagnosis like this feels hope and finds a path forward. So, while the researchers are seeking out cures and the doctors are treating patients, I decided to be someone that answers a phone call or email from a parent, collects helpful resources for our website, and responds to social media posts to offer some peace of mind to other families. Donna, as a special educator, is passionate about sharing her educational advocacy expertise with families to help them navigate special needs and services for their children.

Our family’s commitment is not just for our son or people with retinoschisis, but it’s for every child with a retinal disease. We do it because we feel the pain of the families and know how incredibly difficult this journey is. We do it because we have hope for a cure.” – Chuck and Donna Walls

Family Dynamics

No matter how old your child is…infant, toddler, preschooler, elementary age or teenager, the realization of visual impairment for your child is a shocking event for you and your family. It affects all aspects of your family. Many people don’t realize the impact that raising a child with a disability has on the whole family.

En savoir plus

A smiling family of two parents and four boys standing on the lawn in front of a large stone building

A smiling mother and son sitting in a hotel conference room

Encouraging Independence

It is very common for parents to want to do everything for their disabled child. Some parents feel it’s easier to do things for their child rather than teach them how to do things for themselves. It DOES take a lot of time, but once they learn a task well, you may never have to help them with it again, or at least give minimal assistance. That one hour or several weeks assisting your child on that daily task and slowly pulling away to watch them try it on their own is a feeling of victory not only for the child, but for the parent(s) as well!

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Partnering with your school

Partnerships between schools and other community organizations and families are helping to create supports that enable children and youth to learn and succeed and help families and communities to thrive. These partnerships bring together diverse individuals and groups, including parents, educators and administrators, school boards, community-based organizations, youth development organizations, and health and human service agencies to expand opportunities for children with low vision and their families.