Liza Kramer: Extraordinary Mom

When I asked Liza Kramer to be interviewed for Mother’s Day about her daughter Emily (29), who has Cystic Fibrosis, I did not realize it was also Cystic Fibrosis Awareness Month. I met Liza through my writing friend Roz Warren (See link at the end of the article for Roz’s article on Emily in The Huffington Post).*  So this is a double-duty posting: a profile for Mother’s Day and a focus on Cystic Fibrosis Month. (Liza also told me she loves Mother’s Day, so this is the perfect day for both postings.)

First, a definition from the Cystic Fibrosis Foundation website: (http://www.cff.org/)

“Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein cause the body to produce unusually thick, sticky mucus that: clogs the lungs and leads to life-threatening lung infections and obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.”

Cystic Fibrosis and Tay Sachs are the most common fatal genetic diseases among Ashkenazi Jews. Liza was tested 30 years ago for Tay Sachs, but there was no testing at that time for CF.

Photo of Liza with husband, children and family dog with T-shirts that can be purchased from Emily’s Entourage (www.emilysentourage.org)

Liza is an amazing mom. My interview with her threw me for a loop, because in addition to daughter Emily, Liza and her husband have three other children: a son Coby (23), and twin girls, Julia and Annie (19). Annie is a special needs teen who cannot walk or talk and needs constant care. So Liza, whose background is in social work, has her hands full as a full-time mom.

Liza, Emily, and friends & family have created and fostered an organization called Emily’s Entourage, a which helps others with CF. Emily leads many of the Emily’s Entourage efforts, www.emilysentourage.org, despite that fact that she has a full-time job at Penn Medicine, managing with only 35% lung capacity. She herself, with CF, is a huge patient advocate.

What blew me away as Liza and I sat at Starbucks talking is that this mother considers herself lucky to have the children she and her husband have brought into the world. She is a living example of the idea that we need to take one day at a time, or day-by-day, as she noted. And she also advises women with special needs children to take “baby steps,” that is, to be positive about all the little successes that occur each day.

Liza explained how her children are all very close, best friends, non-competitive and supportive of one another. Even when one child is in crisis, Liza makes a special effort to spend some time with each of her other children, even if it is just driving them somewhere or having some quiet time together. I had the feeling that she doesn’t play favorites, but gives each child what he or she needs at the time.

I encourage you to check out the links and websites that Liza has sent me and educate yourself about Cystic Fibrosis. Emily’s Entourage is doing everything in their power to raise money and awareness for Cystic Fibrosis research.

The quote that Liza left me with is perfect for Mother’s Day and beyond:

Don’t wait! Enjoy every day. My thanks to Liza for her time and her tenacity as a powerhouse parent who works harder than any mom I know to make each day count.

Here are links for you to learn more:


www.EmilysEntourage.org

Like us on Facebook: https://www.facebook.com/EmilysEntourage

Follow us on Twitter: https://twitter.com/EmsEntourage4CF

Follow us on Instagram: https://www.instagram.com/EmilysEntourage

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Also check out:

http://www.youtube.com/watch?v=He2Jw9GYAN8&feature=plcp Tedx talk

*http://www.huffingtonpost.com/roz-warren/for-cystic-fibrosis-aware_b_5255913.html

http://www.youtube.com/watch?v=-P8wPjZgyCI (Emily’s speech on Jewish genetic diseases)

 

3 Responses to “Liza Kramer: Extraordinary Mom”

  1. Paula Says:

    Mothers are amazing. Happy Mother’s Day to all mothers past and present! God bless the Kramer
    family for all their challenges and accomplishments!

  2. Roz Warren Says:

    Great profile of a great mom. Happy Mother’s Day!

  3. Mary-Lou Meyers Says:

    what a wonderful mother to celebrate, one that has been there to support each of her children,
    and one who remains ever watchful and vigilant. It is not one sided for each of the children
    give all to their family.

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