Meet the Egan family: Emily, aunt; Cathy, grandmother; Lilian, 2, who has CF; Tom, grandfather; Stefanie, mom; Connor, brother; and Brian, dad
What is one thing everyone should know about Lilian?
She is living proof that what the Cystic Fibrosis Foundation is doing is working. Early diagnosis, intervention, and the continued scientific advancements can allow for a normal life. She is a sassy, clever, active, and funny little girl who happens to also have cystic fibrosis. (Full disclosure: When we asked Lilian this question, her response was, "That I am, like, a very big girl, and can I have some muffins?")
Who does Lilian look up to?
Without a doubt, her brother Connor. Wherever Connor is, Lilian isn't far behind. It's not easy to have a little sister who is 6 years younger than he is, but Connor is unbelievably patient and kind -- even when Lilian is doing her best to annoy him.
From Connor's perspective, what is the best thing about being Lilian's brother?
“I like to teach her things and she is funny.”
Who are the most important people in your support system?
How could we possibly list them all? We are incredibly lucky to have family both near and far, with everyone taking on different roles and providing support. Some are researchers, some are cheerleaders, some are listeners, some are fundraisers (and some are all of these!) … but all provide humor, perspective, and love.
We are very lucky that Brian's parents, Tom and Cathy Egan, and his youngest sister, Emily Egan, live near us and are near-daily fixtures in our lives. After Lilian was diagnosed, Tom and Cathy largely put their lives on hold and offered to care for Lilian when Brian and I returned to work. The generosity and love of our family -- and friends who are like family -- is amazing and humbling.
As her parents, what is your proudest moment?
It's so fun to see how much she loves being Lilian! (And, she really loves being Lilian!) She wants to go faster, higher, harder. Whatever we are doing (riding roller coasters, riding bikes, swimming), Lilian wants MORE out of the experience!
Is there anything else you'd like to share with the community?
It is not lost on our family that Lilian's excellent health is the direct result of many years of other people's hope and hard work -- fundraising, spreading awareness, participating in clinical trials, research, and more.
Lilian lucked out by being born with a combination of mutations that so happen to be positively affected by new drugs, and we are so grateful for this. It inspires us -- and our community -- to do what we can to contribute to a healthier, longer, and brighter future for everyone with CF.
