As an American I knew very little about the Irish Travellers before the death of my daughter Lila. After she passed, we received genetic testing that identified that she had a rare change to her LARS gene causing ILFS. The discovery of this gene was thanks to Irish Travellers

We as a society owe the Irish Travellers a lot. They are a unique group that has allowed for a great deal of medical discoveries for a variety of genetic disorders. Without them, I would have never known why Lila died.

Because we knew what disorder Lila passed away from, my husband and I could undergo IVF with genetic testing to identify embryos that did not have the fatal change to the LARS gene. We were successful with IVF and had a non affected daughter, Cora, in 2019.

I’m appalled to learn how Irish Travellers have been discriminated against and persecuted. It’s disgraceful. I owe them my daughter’s life. Were it not for them, my sweet Cora would not be here today. I will forever stand up for the Travellers #StandUpForTravellers