The Power of Vulnerability

I, Jan Burger, father of Milan (7), a former retinoblastoma patient, spent the day with my family and am writing this report.

The Retinoblastoma Working Group—composed of Edwin van Miltenburg, Wannes van der Veer, Klasiena Soepboer, Hanneke van de Ven, and Linda de Groot—had a jam-packed program in store for us. For the adults, the Amstelzaal at VUmc was where it all took place. The children, accompanied by a group of fantastic volunteers, were let loose in Kinderstad, the hospital’s so-called “escape room.”

The motto of the first paragraph

In the Amstelzaal, Prof. Dr. Annette Moll kicked off the event. She began by welcoming the Retinoblastoma Team from Amsterdam UMC. Most of the sixteen brilliant minds were in attendance, including Annelies Frankfoorder, a retired nurse who remains deeply committed to “her” little ones. Edwin van Miltenburg then took over. Edwin is the president of the Retinoblastoma Association of the Netherlands and, for the past six months, has also been a board member of the OOG in OOG Association. His remarks captured the central theme of the morning. He quoted “Grandpa” Willem Kind, who passed away in 2018 at the age of 92 and was the very first member of the Retinoblastoma Association: “Don’t let retinoblastoma rule your life—make it a part of it. You can live past 90 with it, but you’ll go through a lot along the way.” A piece of wisdom that is widely shared, as became clear this morning.

Sources of Inspiration on Stage

Her very first source of inspiration was blind influencer Tjarda Struik, a woman who, despite her visual impairment (5% vision), makes the most of her life. In her ambition to live as normally as possible, she has established herself on social media as a role model for the blind and visually impaired. She raises awareness for this demographic, and she does so with a touch of humor. When asked what she does all day, she casually replies, “I wave my kids off and then spend the rest of the day lying in bed.” The opposite is true. She now runs her own business and is also active in politics. She had a clear message for the parents in attendance: don’t be afraid to be strict with your child. “I hated it at the time, but I’m eternally grateful to my parents for this approach. It made me resilient from the moment I opened the front door and stepped out into the harsh world.”

And she has certainly had to learn firsthand that the world can be a harsh place. “Being different makes you vulnerable. People stop seeing anything else and take advantage of your disability when it suits them.” Yet she has never denied who she is. “I am who I am, despite and because of my visual impairment.”

A special movie

Next, director Eline van Diggelen took the stage. Some time ago, Eline was inspired by the stories of ocularist (artificial eye maker) Jelmer Remmers, who lives in her neighborhood. She soon came up with the idea for a film, and on this day we were treated to a sneak preview. The result is impressive. The film beautifully depicts how Jelmer and his team help a young girl receive a new prosthesis. The entire treatment process is captured up close. These images are accompanied by an intimate portrait of five people who open their eyes in front of the camera and see their new prostheses for the first time. The reactions are deeply emotional and demonstrate what the prostheses mean for their self-confidence. “Now I can just be normal” is one of the most telling reactions, followed by tears of joy. A beautiful portrayal of the human value behind the profession of an ocularist.

Next up was Femke Olsman, 21 years old and a former patient with unilateral retinoblastoma. Her presentation was aptly titled “Good Times, Bad Times.” Femke took us through the different phases of her life, from her treatment to the present. In doing so, she revealed her most vulnerable side: she struggled with depression for a long time while attending vocational school. She has since earned her driver’s license, is now a doctor’s assistant, and is getting married next year. It’s incredibly impressive that a 21-year-old can share her story like this. Her father also spoke and shared some fun anecdotes about a headstrong but very independent daughter. The family had to endure a difficult period, but as her father so beautifully put it: “Without valleys, there are no mountains.”

Paralympian

Next up was Sanne Hofman (bilateral retinoblastoma). Sanne is a former Paralympic swimmer (2016 in Rio de Janeiro). Her story is one of battling skepticism. Her belief in her own abilities was essential to winning this battle. While competing, she faced her limitations every day: from her coach’s lack of understanding to the exhaustion of striving to be the best despite everything. It was no different as a student. Before her introductory meeting for her new program, she was told she couldn’t do it. After that meeting, she earned their trust and more than proved them wrong. Because, as she herself says: “By constantly having to convince others, I show that anything is possible.”

Research

The morning concluded with a presentation by Mieke Ouwendijk, a psychologist at Amsterdam UMC. She is about to launch a study on quality of life as young people transition into adulthood: what social and psychological challenges do they face, and how do they cope with them? In the spring of 2023, she will ask parents and children to help answer this important question.

Meanwhile, the teenagers attended a TikTok workshop with Tjarda Struik, and in the so-called “square,” there was time for questions for the medical specialists, the OOG in OOG association, getting to know one another, and a nice lunch.

Meanwhile, back with the main characters themselves…

While the adults listened intently to the presentations, the children had the time of their
lives in Kinderstad. This space is filled with games, ranging from a soccer field to a racing game, from a checkerboard to a foosball table. And as if that weren’t enough, there was a theater performance, and plenty of photos were taken in the “photo booth.” After the adults joined the children following a delicious lunch, another surprise was pulled out of a hat: a real magician. With the look of amazement still on the spectators’ faces, the day concluded with a real mini-disco called “The Musical.”

A successful day

I look back on a wonderful day. Milan summed it up best: “I’d like to stay, Dad.” And to think, this was in a hospital where he’d lived through his worst nightmares. Grandpa Willem would have been proud!

Click here for more photos.

The 2022 Retinoblastoma Family Day was made possible in part by a €2,000 grant from the Oogfonds. Other sponsors of the event include Tjarda Struik, Femke and Jeroen Olsman, Sanne Hofman, Slijterij Wijnhandel van der Linden in Soest, Photoboothpoint.nl, and Minidisco.nl.

By Jan Burger