June 30, 2022 – 07:43
What if your worst nightmare becomes reality?
Metakids starts campaign “We couldn’t do anything about it” around one of the biggest causes of death among children in the Netherlands.
Yesterday, on the International Day of the Heel Prick, Metakids launched the campaign “We couldn’t do anything about it” in the presence of Princess Laurentien and ambassadors Dieuwertje Blok and Daniel Dekker with the aim of drawing as much attention as possible to the seriousness and impact of metabolic diseases. Despite the fact that this is one of the leading causes of death among children in the Netherlands, few people are aware of the consequences of these serious and often fatal metabolic diseases. Early diagnosis and treatment is vital.
A fateful coincidence, a hidden flaw in the DNA of one or both parents causes a hereditary metabolic disease. Because there are so many different types of metabolic diseases (more than 1,500) and the course of these diseases is different in every child, this often means a long, desperate search for a diagnosis for parents. And often it is already too late.
Importance of the heel prick
Of the more than 1,500 hereditary metabolic diseases, only 15% is currently treatable and about 1.5% is detected by the heel prick. Galactosemia and PKU are examples of metabolic diseases that are present in the heel prick. Many more of these diseases must be included in the heel prick so that children receive a diagnosis immediately after birth and parents know in good time what is wrong with their child. Thanks to the heel prick, treatment can be started immediately after birth and children with a metabolic disease have a better quality of life and a future perspective. We want to make this possible for all children who are born with such a debilitating disease.
Unfortunately, the harsh reality is still that many children are diagnosed too late with all the serious consequences that entails. The heel prick and research into new treatments are vital.
Impactful campaign “We couldn’t help it”
Director Pieter Brinkhorst: “From the perspective and experience of parents, we ask the whole of the Netherlands to pay attention to these debilitating diseases, which are in the top 3 leading causes of death among children. This must and can change. In this campaign, four parents use penetrating portraits and stories to show the impact of a metabolic disease on their lives.”
Due to the amount and complexity of metabolic diseases, since 2020, metabolic patient associations and fundraising organizations have joined the United for Metabolic Diseases (UMD). They have also united in a visionary and energetic metabolic community. This joining of forces is closely in line with the mission of Number 5 Foundation, an organization of Constantijn and Laurentien van Oranje. Based on their independent process guidance, they help in the establishment of this unique partnership.
Metakids wants to make timely diagnosis and treatment possible for all children with a metabolic disease. To achieve this, the organization creates as much attention and awareness about metabolic diseases as possible and collects as much money as possible for research. The research funded by Metakids focuses on early diagnosis and treatment of metabolic diseases. Within 10 years, Metakids aims to have 50% of all metabolic diseases treatable. The ultimate goal is to make treatment possible for all metabolic diseases, so that no child has to die from it.