Embryo testing: 'My child was born with a death sentence’
As Malta debates testing embryos for nine specific genetic disorders, two couples tell Claudia Calleja what the suffering is like for a child with a specific rare condition, who faces certain death in early childhood. Joseph and Stacy know that, if she gets pregnant, their baby has a high chance of inheriting a severe genetic condition they both carry – a condition that means certain death following a brief life filled with suffering. They know because they have lived it. Three years ago, the couple lost their 16-month-old son to gangliosidosis, or GM1, a genetic disorder that progressively destroys nerve cells in the brain and spinal cord. The diagnosis was essentially a death sentence. Voices have been altered to protect people's identity. Now, they want nothing more than to become parents again. But they are scared – they don’t want to risk seeing another baby suffer and die when this can be prevented. Their only hope to avoid this risk is pre-implantation genetic testing on embryos, a bill that is currently being debated in parliament and is due to be signed into law before parliament goes into recess. GM1 is one of the conditions that would be screened for if the law...