Parents and loved ones

To provide additional support to parents, our association has teams of volunteers. These teams provide information and a listening ear. In the retinoblastoma, anophthalmia, and microphthalmia teams, you’ll find parents who themselves have a child with one of these conditions.

In our private Facebook group, members of the association can connect with each other online. There, you can ask questions and read about others’ experiences. This group includes people who, for various reasons, see with only one eye.

You can also join our WhatsApp community and choose the group that interests you.

• Check out the pages on anophthalmia, microphthalmia, and retinoblastoma on our website.
• Read articles in the library about anophthalmia, microphthalmia, and retinoblastoma.
• Check out the information on anophthalmia, microphthalmia, and retinoblastoma on the Amsterdam UMC website.
• Be sure to check out Minke’s video on our YouTube channel about putting in and taking out her artificial eye. It’s important for a child to learn to do this on their own as early as possible so they don’t develop a fear of it. With a plastic prosthesis, not much can go wrong. You can even drop it.
• Learn more about going to school, studying, and playing sports with one eye.
• This page is for children and teens who see with one eye.
• A tool has also been created specifically for the loved ones of someone with an eye condition. Because when you have a child with an eye condition, your life changes, too.
• Check out these booklets created by the Eigen Gezicht Foundation.
• The (Sch)ouders platform was developed by and for parents of children with special needs. Within this (Sch)ouders center for experiential knowledge, parents can benefit from each other’s experiences.
• On the Oogvereniging website, you’ll find a lot of information about raising a child with a visual impairment.

What is a “brus”?
A sibling is a brother or sister of a child who has to go to the doctor often or needs extra care. Being a brus can be nice, but sometimes it can also be a little hard. Your life might be different from your friends’. Sometimes you feel proud, sometimes angry or sad, and sometimes you feel really strong. All feelings are okay. Nothing is weird.

What can happen if you’re a sibling?

• Mom and Dad are often busy with responsibilities and appointments.
• Sometimes your brother or sister has to go to the hospital.
• You might help out at home more often.
• Sometimes you feel a little forgotten.
• Sometimes you’re scared or worried.
• Important: You are very important, too. Your feelings and thoughts matter!

Tips for You

• Talk about it: Tell your dad or mom, a friend, or someone you trust how you’re feeling.
• Take some time for yourself: Do something that makes you happy, like playing, exercising, gaming, drawing, or listening to music.
• Ask questions: Ask what’s going on with your brother or sister. That way, you’ll understand it better.
• Seek support: Talking to other siblings can help. They often understand exactly how you feel.

Information for Siblings
As a sibling, you go through all kinds of things: sometimes worries and stress, but also happy and wonderful moments. There’s also information just for you. This is how we make sure that all children—including siblings—are seen and heard.
This “Stoere PRAAT KLETS DOE” book helps you understand what’s happening, talk about it, and explain it. Check out the book for siblings.

Are you a partner, child, or friend of someone who has lost an eye and would like to connect with others? You can also turn to the OOG in OOG Association for this. Please contact us. During our annual National Connection Day, loved ones are also warmly welcome, and there is a support group for partners. We also regularly organize an Online Eye Contact Meeting for loved ones.

Are you familiar with this psychosocial tool for family members and friends? The information in this tool addresses emotional and social challenges caused by a loved one’s eye condition or visual impairment, as well as the support available to you as a family member or friend. We also highly recommend the “Resilience” conversation tool for informal caregivers.

On the Visio website, you’ll find these tips for interacting with someone with a visual impairment.

During the National Support Day, partners of people who had undergone an eye removal shared these tips with other partners.