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Volunteer Advocate
cf insights cf insights

Walk for Emme and Erin

My name is Danielle Weil, I live in Brantford, Ontario, and I am the mom to two beautiful girls – my twin daughters Mary-Elizabeth (who we call Emme) and Erin. My girls are 13 months old and they light up my world.

As first-time parents, the excitement and love my husband Matt and I felt was overwhelming. Our journey to becoming parents wasn’t as straight-forward as we had hoped, and we tried for quite a while before exploring fertility treatment. The doctor warned that he didn’t think the first treatment would take, and for us not to get our hopes up. He also warned that having twins, which runs in my family, was a possibility. I can still remember my smile when, at our first ultrasound, we saw two little heartbeats.

I had an absolutely healthy pregnancy up until the day before the girls were born. We went in for a check and both girls’ heart rates were great, but they noticed one of the babies wasn’t moving. As a precaution, they decided to induce me. The girls weren’t quite two days old when I visited them in the NICU. I was surprised that it was me, not the medical staff, who realized Emme hadn’t yet had a bowel movement – it still scares me that I’m the one who noticed. An abdominal scan found she had a blockage. And so while Erin and I were discharged, Emme was transferred to McMaster Hospital to investigate the blockage. Emme was diagnosed with cystic fibrosis (their first newborn screening had to be repeated due to an error) and spent the first three weeks of her life in hospital, before finally joining her sister Erin at home.

There was no indication we’d head this way. There was no history of CF in our families, and sometimes it’s challenging to understand – I have twin daughters, one who has CF and another who does not – but we don’t let ourselves go there. Life is hectic for us, for sure. Our days are filled with chasing our girls who are just on the edge of learning to walk, changing diapers, feedings, and treatment, but we know no different. Erin hits her milestones about 6-8 weeks ahead of Emme – I like to think she’s showing her sister how it’s done.

One of the first things Emme’s clinic told us was: “Your daughter is healthy; it’s just going to be more work to keep her that way.” Hearing it put that way was a big burden off our shoulders. Perspective is everything and that approach has made such a difference for us, it was exactly what we needed to hear.

The best therapy for me has been getting involved. Going to chapter meetings, educating myself and my family about CF, learning about the progress in research: it’s all so empowering and has been a form of therapy for me. I’m not just doing it for Emme, or myself. I’m doing it for Erin, too. My girls need each other.

All I want is my girls to have their lives with each other. I don’t want them to be short-changed on having one another. I hope my dreams of a cure in my lifetime come to fruition, and that both of my girls live long, healthy and happy lives.

Join us in making a difference for people living with cystic fibrosis!

Register or donate to the Walk!