Le point de vue d'une mère : Célébrer la fête des mères avec la maman d'Emily

Emily’s Entourage would like to wish a very happy Mother’s Day to all the special mothers out there! To celebrate this important day, we asked supermom Liza to answer some questions and share her thoughts as the mother of Emily, Coby, Julia and Annie.

What’s on your mind as you celebrate Mother’s Day this year?

I love Mother’s Day. I always live the day to the fullest. I wake up bright and early, have a lovely brunch with my family, and enjoy the beautiful weather. I celebrate each Mother’s Day as richly as possible because I don’t take them for granted.

Mother’s Day isn’t bittersweet for me and never has been. It’s always been a day of deep appreciation for having four beautiful kids.

Emily recently celebrated her 30th birthday. What are your hopes, dreams and concerns linked to this milestone?

I always want to make birthdays so special, so perfect—especially for Emily. Her birthdays come more with a pang of fear and worry. There’s always such a big build up knowing that it’s another year. I get scared. My hopes are that we’ll be able to find something that will be able to hold Emily over so new therapies and hopefully a cure will arrive in time to save her. We’re moving that way. We just have to keep moving that way really, really quickly.

Ok, now for some fun stuff. What is a little known fact that most people probably don’t know about Emily?

When Emily was a toddler she had three imaginary friends: Louie, Nookie and Ockie. You know how at a playground with a sandbox the kids all share their toys? Other kids in the sandbox would share their shovels and buckets; Emily would share her imaginary friends. She’s always had a wild imagination!

What does the growing Emily’s Entourage movement mean to you personally?

The response to Emily’s Entourage has been unbelievable. It gives me hope to know there is so much goodness and kindness in the world, and that people truly want to help, even total strangers.

First, we focused exclusively on raising money. Now, we’re investing the money in groundbreaking research targeted at Emily’s rare nonsense mutation. This has never been done before with the degree of focus, funding and coordination that Emily’s Entourage is bringing to it. It is amazing to watch, but there’s not a moment that goes by that we don’t remain painfully aware of the ticking time bomb we’re working to outpace.

Given Emily’s health status, where do you find strength, hope and peace of mind?

Emily has 35% lung function. Every day she has to make decisions about what she does, and how much energy she can expend. When she doesn’t feel well, it’s hard for her to breathe. One cold could be devastating. She doesn’t have room to get worse.

We try to not think too much into the future. With Emily and all my kids, I take advantage of every day. I don’t waste time. I love being a mother to my four very different, very special kids and witnessing the incredible love they have for each other.

Emily’s Entourage is a major source of strength. We’re doing something together that we couldn’t do alone. It’s powerful to change the science focused on rare nonsense mutations of CF. We just have to do this quickly, keep moving forward, and keep our eyes on the prize.