Could you briefly introduce yourself?
My name is Elke Knaven; I’m married to Edward, and we live in Waalwijk, North Brabant, with our daughters, Minke, who is 14, and Milou, who is 10. I work as an intake nurse at the Jeroen Bosch Hospital. In my free time, I enjoy reading and volunteering with organizations such as Vereniging OOG in OOG. I also play volleyball and love going camping with my family.
Why do you volunteer with the OOG in OOG Association?
Because my daughter Minke was found to have an abnormality in her left eye at birth, we joined the association.
At the AMC, she was diagnosed with coloboma (a part of the eye is missing) and anophthalmia (a small eye). Fortunately, after various eye tests, it turned out that she could see normally with her right eye, but unfortunately not with her left. We left things as they were until Minke was almost four years old. Then we started searching online to see what cosmetic options might be available for her. Through Frédérique Bak’s practice in The Hague, Minke began trying to wear an artificial prosthesis. This caused quite a bit of difficulty at first for the toddler, who was still very young at the time. Eventually, through Jelmer Remmers at the AMC, we ended up at the MICA clinic. After several consultations with Dr. Hartong, a mold was made of her affected eye socket under anesthesia. This allowed the ocular prosthesis to fit better and made wearing it more comfortable.
We also discovered then that there was a special organization for children with these eye problems. We went to the Family Day. There, Minke realized she wasn’t the only one with an eye condition. We—still inexperienced parents with questions—were able to turn to other parents for support.
How does the eye prosthesis affect Minke’s life?
Minke is developing well and, in principle, can She does everything with her prosthetic eye. She rides horses and is a member of a musical theater group in our town.
How long have you been volunteering?
I’ve been a volunteer since 2013. But now that Minke is older, she’s also gotten involved with OOG in OOG. A while back, Minke made a vlog about how she puts her prosthesis on and takes it off. This vlog is still getting a lot of views, and children have even become fans of her videos.
What does your volunteer role involve?
I’m a peer support contact person for new parents who have questions. For example, I attend the online meetings where parents get to know each other and talk with one another. It’s a great way to share information. I’ve also recently joined the focus group for the new website that’s currently being developed. I also gave a presentation at Family Day about our experiences with Minke’s ocular prosthesis. And we continue to attend Family Day regularly, so we can serve as role models for new parents and younger children. It’s a wonderful role—one that Minke, by the way, takes on very well.
What do you like about being a volunteer?
We received a lot of support from the association in the early years. It’s great to be able to give something back now.
Watch the vlog Minke made about putting on and taking off her prosthesis.
Would you like to help support our charity? We’re always looking for new, enthusiastic people to join one of our volunteer teams. Send an email to vrijwilligers@ver-ooginoog.nl, and we’ll work together to figure out what you’d like to do.
