We are thrilled to introduce you to Highland Park resident, Brooke Kauf! Brooke’s daughter Charley was born with a painful, life-threatening, genetic skin disorder called Epidermolysis Bullosa (EB). It is often referred to as ‘The worst disease you’ve never heard of.’ But this rare skin disorder is not stopping Brooke and the family from living life to the fullest! Read on to learn how they live, love and what you can do to help.

 

Where are you from originally and how long have you lived in town?

I’m originally from a small town called Centreville, MI. (population 1200). It’s near Sturgis which is near Kalamazoo. My husband and our two kids moved to Highland Park in 2014 after living in the city for 10 years.

 

Child(ren) and Age(s)?

We have a 4th grade boy and a 1st grade girl.

 

Favorite things to do with your children?

Family Vacations are always the best time because we’re all together and it’s usually somewhere warm and relaxing. Half the fun of our family vacations is getting there! I love spending time with each child planning their checklist and packing their suitcase. The excitement and energy they give off the morning of the trip and on the airplane is contagious and usually sets the tone for our trips. I love teaching them about different culture, cuisines and wildlife and opening their eyes to fun new adventures. Every year they amaze me at the different foods and activities they explore.

I also love reading them stories at night when we are all comfy in our PJ’s and ready for bed. This is where I usually get the “dirt on the day” too.

 

One thing people would be surprised to know about you…

I converted to Judaism in 2009. When I met my husband, Michael, I started learning more about Judaism and thought it was a beautiful religion. I didn’t grow up with a religious background, so I didn’t have a connection to one and  wanted to make sure our children did. It was important to me that our children would be considered Jewish by Jewish law, so I decided to convert before they were born. Surprisingly, our son William came early. Four months after he was born, we had a beautiful conversion together.

 

Anyone special you’d like to thank for helping you through parenthood? 

My parents: My mom is like Peter Pan if you will. She has such a kindred spirt and always played with us (my sister and brother) teaching us how to use our imaginations. I try to play with my kids every day and encourage them to use their imaginations as much as possible. My dad was very good at turning everything into a lesson and trying to use our mistakes to become better individuals. I see myself teaching my children these same lessons using the same language my dad used with me. The best thing my dad ever taught me and one I remind my children every day: the 3 B’s – Be Kind, Be honest, Be You.

My girlfriends – I have a never-ending text stream with 8 of my closest girlfriends. This has been my survival guide of mommyhood. They have helped me with A to Z including: best baby products, tantrum tricks, cold remedies, discipline do’s and don’t’s, pointers on potty training…you name it!

 

Are you involved in a business venture, a local organization, a creative endeavor, or in the corporate world? Please share!  

My husband and I (along with our wonderful committee) are hosting a local event, Change For Charley, that supports the EB research partnership (EBRP).

Our daughter Charley was born with a painful, life-threatening, genetic skin disorder called Epidermolysis Bullosa (EB).  Children with EB have a mutation of their collagen 7 gene causing severely fragile skin, both internally and externally, that tears and blisters with even the slightest trauma.  Our daughter endures a grueling 3 hour wound care-dressing change daily and has painful blisters all over her body.  EB is so rare and devastating that it’s often referred to as “The worst disease you’ve never heard of.”

The EB Research Partnership (EBRP), is the largest non-profit dedicated at treating and ultimately curing EB. It was cofounded by Jill & Eddie Vedder, lead singer of Pearl Jam.

We are hosting a charity event, Change For Charley, supporting EBRP on Saturday, March 9th at Artifact Events in Chicago, 7:00pm-1:00am. The event is emceed by ESPN’s Scott VanPelt and will have a silent & live auction, delicious food and great music. Last year, our inaugural event raised over $320,000 or EB Research. If you’d like to join us or make a donation, please visit our website: www.changeforcharley.com.

 

Can you speak a little bit about what the daily life is like for a family living with EB? 

Since there isn’t currently a cure for EB, bandages and creams are used to protect the skin from blistering or tearing. Every day we spend on average, 3 hours preparing these bandages and cleansing & wrapping Charley’s skin. Bath time is not fun time for kids living with EB. It’s actually the worst part of Charley’s day because she has to endure a grueling 20 minute soak in a vinegar/salt solution bath which helps cleanse the skin of bacteria. From the meals she eats, to the places she goes and activities she plays, every part of her day is carefully and thoughtfully planned out and discussed with her so she feels safe and comfortable in every environment.

New families dealing with EB should know that managing daily care becomes more routine each year. They should use resources like DEBRA.org and ebresearch.org and start seeing a family therapist as soon as possible to help ALL members cope with the pain EB causes to their family.

 

How has the North Shore community been instrumental in your daily support?

We are blown away by the support and compassion that all of our new friends have shown us since we moved here 5 years ago. From the children, parents, teachers and school board…everyone has been so amazing at creating a safe and fun environment where Charley feels comfortable to live, play & learn. Our North Shore community plays a huge role in helping our event succeed each year. From local donations, corporate sponsors to volunteers, we couldn’t pull it off without them.

 

 

 

If you’d like to join us or make a donation in support of EB research, please visit our website: www.changeforcharley.com.

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