My name is Danielle Weil. I live in Brantford, ON with my husband, Matt, and our two beautiful twin girls, Erin and Mary-Elizabeth (Emme). At one and a half years old, both Erin and Emme are tenacious, stubborn, very strong-willed and so incredibly smart. It amazes me every day what they are learning to do.
When Erin and Emme were born, the doctors noticed that Emme had a bowel blockage which ultimately landed her in the critical care unit. They suspected cystic fibrosis (CF), but needed to wait for the newborn screening results to confirm. By the time we received Emme’s diagnosis of CF, my first feeling was a sense of relief. It had been two weeks of overwhelming information, crushing worry, trying to deal with a newborn (Erin) at home, a newborn still in the NICU, recovering from a C-section and, constant travelling between home and the hospital. I was so relieved to finally have an answer. My first thoughts were that now we know what Emme’s diagnosis was, we could put a plan in place and move forward.
Our family was outstanding in their support from the very beginning. Since Emme’s diagnosis, one of my sisters has taken it upon herself to learn the physio treatment routine that Emme requires so that Matt and I can occasionally have a night out. My other sister has joined my mother and I on fundraiser planning committees, and babysits for me every two weeks so that I can have a day to run errands. My older brother is a business owner and has adopted Cystic Fibrosis Canada as his charity of focus, sponsoring every event he can. Matt’s brothers are always checking in with us as they both live a long distance from us. Our parents are involved with many fundraising activities and have participated in some advocacy efforts as well, and spoil the girls rotten!
My family is the most important thing to me. I’m grateful that I have such a strong partner in this journey with me, and beautiful children that amaze me every day. I’m incredibly thankful for the opportunities that have been given to us by Emme’s diagnosis. We have the opportunity to meet amazing people that are fighting as hard as we are and who understand what we are dealing with. As isolating as CF can be, we have joined such an incredible community of people who will fight alongside us no matter what it takes. I’m thankful for the phenomenal advances in research that are leading to the most exciting developments I could ever imagine. I’m almost giddy at the thought of where we may be 10 years from now in terms of treatments and medications.
This holiday season, my biggest wish is for my daughters to be able to grow up together. Key to this is another wish, a wish for better access to CF medications. Access to CF medications that we are being denied, and access to the powers that be to impress upon them the desperate need for change in how we evaluate new medications in Canada. I wish to see a rare disease strategy that works, and to see my daughter and everyone we have met along the way holding a gene modulating drug in their hands.
In terms of hopes for the future, I’m looking forward to watching my girls’ personalities blossom. In spite of all the difficulties and challenges that she has faced, Emme is so happy and bubbly, always smiling. Erin is often thought to be more serious, but is proving herself to be such a goofball with a sharp sense of humor. The new discoveries that they are making every day are what give me hope—if they run into a barrier, they are finding ways to break them down with or without my help.
I think the biggest impact for us has been that Emme having CF has made us hyper-aware of making sure that Erin never feels left out or neglected because of Emme’s additional needs. We are constantly striving to make sure that time, items, treats, and attention are fairly given to each of the girls, if not always in the exact same way. It has meant a strict schedule of alternating the distribution of treatments between Matt and I so that Erin always has one-on-one time with one parent while the other is with Emme doing physio or breathing treatments. It has meant that Erin has her own set of medical equipment such as a mask and percussion cups. It has meant that I am constantly correcting people when they inquire only on Emme’s wellbeing by answering, “they are both doing well”.
We have always stressed to people that Emme and Erin are individuals, drastically different and their own person. Emme having CF was just one of the differences between the two. Emme loves building things and making noise while nothing makes Erin happier than playing with her dolls and reading a book. One loves the water while the other acts like she will melt in the bath. One wouldn’t sleep unless on her tummy, and the other screamed all the way through tummy time every single day. I’m fully expecting that as they grow up, these differences will just continue to multiply, but I have a feeling that it will be a perfect example of ‘opposites attract’. I think that their long list of differences will just bring them that much closer and they will be the best of friends.
Thanks to the generosity of people like you, advancements made in the last 30 years mean someone’s wish of graduating university, becoming a parent, or watching their children grow— is closer to a reality.Donate now so that Danielle can watch Emme and Erin grow up together.