The University of Liège is now using new technology. It might save the lives of many sick children. It makes it possible to quickly sequence their genetic heritage, as well as that of their parents, to identify possible genetic causes.
Verviers, in the province of Liège. Little Lucien’s dad carries him and supports him at all times. But the little boy struggles to move. He is weak and subject to numerous epileptic fits.
After many months of treating different symptoms without really understanding what he was suffering from, he has just been diagnosed with a rare genetic disease. “His life was not in danger a few months ago“, says Joseph, his dad. “Right now his life is. The operation is vital for him.”
At the University of Liège, researchers have deposited the DNA of little Lucien and that of both parents in a machine of a new kind.
In just two days, the machine decodes the more than three billion possible combinations that make up the genome. Aimé Lumaka Zola is a doctor and researcher in genetics and genomics: “We use this data to be able to identify the letter or the part of the genetic material of the individual which carries an anomaly. Once the problem has been identified, doctors finally understand what these children are suffering from. They would be a thousand in Belgium, like Lucien, to need this kind of decoding. “Currently, a therapy is being tested in France. It would allow little Lucien to get better if the treatment proves effective. At the moment it is just an administrative issue for him to receive this treatment.”
He might have learned to walk with help
But therapy is priceless. We are talking regarding a million euros. Without reaction from the Belgian authorities, the operation was postponed. Joseph, the father, continues: “Becoming a ‘normal’ kid? No! But improving his quality of life… He might have learned to walk with help, be able to hold his head up. It would have been a rebirth.”
In the meantime, the unemployed dad has difficulty covering the costs of equipment and medication, which he estimates at more than 500 euros per month.
