Paramount ❤️ Lucy & Metakids

On December 21st we will run 117KM from Amsterdam to Zwolle to raise money for Metakids. You can sponsor us right away by clicking on the “steun deze actie” button. Why do we think this is important? Because we hope that many more families like us, with a child with a metabolic disease, will be able to live a good life.

When Lucy was born, we had one simple wish for her: we hoped that she would make the people around her happy and that she would find people around her who made her happy. Maybe we should have been more precise and wished that Lucy would be healthy. That she, like other children, would be able to grow up normally: go to school, make friends, play sports, study and discover the world. But instead, her reality changed. Lucy's life was filled with hospital visits, strict medication and dietary rules, and feeding through a stomach tube. For us as parents and the people around us, life was filled with constant uncertainty without a clear vision of the future. Every day feels like a new ‘Groundhog Day’, because we feel like we are barely making any progress.

This story began when Lucy was three months old. As a baby, she drank poorly, slept a lot and was apathetic when she was awake. After a flu, she ended up in the hospital. After a few days of immense uncertainty, in which we were afraid of losing her, we finally got clarity: Lucy had a metabolic disorder. The news came with a mix of relief and disappointment. On the one hand, there was clarity and the disease appeared to be manageable. But on the other hand, there was no cure. The diagnosis at the AMC: ‘Argininosuccinate lyase deficiency’, a metabolic disease in which the breakdown of proteins is disturbed, leading to the accumulation of ammonia and other specific waste products in the body. From that moment on, we knew that Lucy would have to follow a strict diet for the rest of her life and always take medication. And the most painful of all: the damage this disease had caused – brain damage – was irreversible. Our daughter would be mentally and physically handicapped, but we did not know exactly how that would develop.

Now, eight years later, we have found a way to be happy within this new perspective. We have learned not to focus on what is not possible, but on everything that is possible. And actually our wish has come true. Lucy is surrounded by people who make her happy, and she in turn makes the people around her happy. That thought gives us the strength and energy to continue. That is why we are grateful that we can now use this strength, together with 3FM Serious Request, to mean something for all those families who are going through the same thing as us, but where there is still no clarity: metabolic diseases that are not treatable or detectable. Fortunately, Metakids is doing a lot of research, but that requires attention and especially money. Your donations are therefore very much needed!

The runners: Aleta, Aron, Chikako, Dennis, Dieuwertje, Eelke, Essere (5), Finn (11), Gertjan, Gijs (9), Giso, Hana (9), Toshi (6), Jan Willem, Jax (2), Jonah (8), Julius (8), Karen, Karla, Lardy, Linda, Lois (11), Lucy (8), Maaike, Marco, Marieke, Mariette, Nienke, Nina, Odin (6), Philip, Puck (10), Reinier, Sam (8), Sien (8), Simone, Tjibbe (12), Tobe (9), Ward, Yfke (11), Youri, and more to follow..

And you are also very welcome to cheer us on or run with us on December 21! If you want to run (part of) the route, please let Gertjan (Gertjan.vanvliet@paramount.com) know.